Podcasts about international progressive ms alliance

Most people living with MS don't see their neurologist often. For many, it might be only once or twice a year. A lot of important things take place during that appointment. Symptoms are assessed. Decisions about disease-modifying therapies are made or, sometimes, changed. Questions get asked and, hopefully, answered.   Dr. Barbara Giesser returns to the podcast, this time, to review the things that should be discussed and followed up on at your appointment with your neurologist or MS specialist. We're also sharing some good news about MS research funding from the National MS Society and the International Progressive MS Alliance. We'll tell you how you can catch the replay of the International Progressive MS Alliance's webcast focused on putting people with MS at the center of MS research. We're sharing the encouraging outcome of the Phase 2 clinical trial for vidofludimus calcium and progressive MS. We'll tell you how you or a family member can participate in the GEMS study. And we'll tell you about a new AI tool that can accurately diagnose a patient's transition from relapsing-remitting MS to secondary progressive MS, often before a clinician can! We have a lot to talk about! Are you ready for RealTalk MS??! This Week: What (should) happen during your appointment with your neurologist  :22 National MS Society invests $18.1 million in new research  1:04 International Progressive MS Alliance funds 3 clinical trial development projects  3:53 Catch the replay of the International Progressive MS Alliance webcast focused on putting people with MS at the center of research  6:56 Immunic Therapeutics announces positive results from the Phase 2 clinical trial evaluating vidofludimus calcium for progressive MS  7:45 You or a family member may qualify to participate in the GEMS study  10:00 AI tool can accurately diagnose the transition from relapsing-remitting MS to secondary progressive MS  12:01 Dr. Barbara Giesser discusses the kinds of conversations you should be having during your appointment with your neurologist  16:49 Share this episode  30:38 Have you downloaded the free RealTalk MS app?  31:00 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/401 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Become an MS Activist Web: https://nationalmssociety.org/advocacy Email: msactivist@nmss.org National MS Society Commits $18.1 Million for Research (Projects Being Funded) https://cdn.sanity.io/files/y936aps5/production/a788b2e3d8409173a4de417fcf3bebcfbddddc41.pdf International Progressive MS Alliance https://progressivemsalliance.org International Progressive MS Alliance Webcast: Putting People with MS at the Center of Research https://youtube.com/watch?v=uacSJ7ZxuRM Participate in MS Research: The GEMS Study https://recruit.cumc.columbia.edu/studyinfopage/1419 GEMS Study Contact: Juliana Oyegunle Email: gems_neuro@cumc.columbia.edu Phone: (212) 305-2434 STUDY: Conformal Prediction Enables Disease Course Prediction And Allows Individualized Diagnostic Uncertainty in Multiple Sclerosis https://www.nature.com/articles/s41746-025-01616-z Multiple Sclerosis Progression Tracker https://msp-tracker.serve.scilifelab.se/ Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 401 Guests: Dr. Barbara Giesser Privacy Policy

If you're living with MS, you've probably already learned that hot weather, hot baths, or anything that causes your body temperature to increase can quickly cause your symptoms to worsen. But winter can also be a challenging time. Less daylight, frigid temperatures, ice, and snow can all have an impact on MS. Dr. Lisa Doggett returns to the podcast with tips and strategies for enjoying winter while staying healthy, safe, and warm.  We'll also remind you that the International Progressive MS Alliance global webcast is happening tomorrow -- Dec. 11th! And we'll share the details you'll need to sign up. We'll tell you about study results from Sweden that show that experiencing serious COVID-19 makes it twice as likely that someone will develop MS. (And we'll tell you why those study results aren't as scary as they may sound!) We're sharing research that has uncovered evidence of nerve damage in the central nervous system up to 9 years before someone experiences MS symptoms. We'll tell you about a team of biomedical engineers who are creating a tiny implantable device that will warn you if your MS is worsening or if you're heading for a relapse. And if you're over 55, you're living with MS, and you have 15 minutes to spare, we'll tell you about an online survey that we hope you'll decide to participate in. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Winning against winter when you're living with MS   :22 Don't miss the International Progressive MS Alliance global webcast on Dec. 11  1:46 A study shows that serious COVID-19 doubles the likelihood that someone will develop MS  2:42 Research reveals that nerve damage can occur in the central nervous system up to 9 years before you can experience any symptoms of MS  6:13 Imagine a tiny device implanted in your arm that can alert you if your MS is worsening or you're headed for a relapse   8:48 If you're 55 years old or older and you've been diagnosed with MS, there's a survey just for you  10:56 Dr. Lisa Doggett shares tips and strategies for thriving in cold weather when you're living with MS  12:29 Share this episode  26:14 Have you downloaded the free RealTalk MS app?  26:33 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/380 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com REGISTER FOR THE WEBCAST: What We're Learning from Clinical Trials https://www.msif.org/webcast-clinical-trials STUDY: SARS-CoV-2 Infection and Risk of Subsequent Demyelinating Diseases: National Register-Based Cohort Study https://academic.oup.com/braincomms/article/6/6/fcae406/7909395 STUDY: Temporal Dynamics of Plasma Neurofilament Light In Blood Donors with Preclinical Multiple Sclerosis https://neurology.org/doi/10.1212/NXI.0000000000200335 SURVEY: If you are 55 years old or older and living with MS, please complete https://illinois.qualtrics.com/jfe/form/SV_5oM7xmdpdSphTiC Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 380 Guests: Dr. Lisa Doggett Privacy Policy

More effective treatments and even cures for MS can only happen as a result of clinical research. And clinical research can only happen when people living with MS choose to become research participants. But what are the pros and cons that you should consider when you're thinking about participating in MS research? The National MS Society's Associate Vice President of Research, Dr. Kathy Zackowski, returns to the podcast to discuss the risks and benefits of participating in clinical research. We're also joined by Mimi Brown, who lives with primary progressive MS. Mimi will share her experiences as a participant in several MS research studies. We'll also remember Professor Giancarlo Comi, a true giant in the MS research community who passed away last week. We'll discuss the updated Brain Health -- Time Matters report. We'll tell you about a research collaboration between the National MS Society, Breakthrough T1D (formerly the Juvenile Diabetes Research Foundation), and the Lupus Research Alliance. And we're sharing the details about the International Progressive MS Alliance's upcoming global webcast. We have a lot to talk about! Are you ready for RealTalk MS??! Remembering Professor Giancarlo Comi  :22 This Week: Participating in MS research   3:28 Experts release the Brain Health -- Time Matters report  4:10 The National MS Society teams up with Breakthrough T1D and the Lupus Research Alliance to fund research in common mechanisms that drive autoimmunity  6:35 The International Progressive MS Alliance is hosting a global webcast on Dec. 11  9:27 Dr. Kathy Zackowski and Mimi Brown discuss the risks and benefits of participating in MS research  10:58 Share this episode  29:52 Have you downloaded the free RealTalk MS app?  30:11 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/379 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com REPORT: Brain Health -- Time Matters https://www.msbrainhealth.org/wp-content/uploads/2024/09/Brain-Health-Time-Matters-2024.pdf VIDEO: Brain Health -- Time Matters https://www.msbrainhealth.org/launch-videos Decoding Immunity: Common Mechanisms of Autoimmunity https://decodingautoimmunity.org REGISTER FOR THE WEBCAST: What We're Learning from Clinical Trials https://www.msif.org/webcast-clinical-trials Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 379 Guests: Dr. Kathy Zackowski and Mimi Brown Privacy Policy

When it comes to living your best life when you're living with MS, the first step is to make smart lifestyle choices. Maintaining a healthy lifestyle doesn't require pills, injections, or infusions. And making smart lifestyle choices can make a real, measurable difference in your quality of life. Joining me to talk about the benefits of maintaining a healthy lifestyle and share some tips and strategies for living your best life when you're living with MS is Dr. Lisa Doggett, a family and lifestyle medicine physician at the MS and Neuroimmunology Center at Dell Medical School at the University of Texas at Austin. Dr. Doggett was diagnosed with MS in 2009, and she's the author of the memoir, ‘Up the Down Escalator: Medicine, Motherhood, and Multiple Sclerosis'. We'll also tell you about a research team that's looking to improve the way that stem cells are transplanted -- and why that's a good thing for people with MS. We'll share the details behind the European Union's approval of a new Ocrevus formulation that makes the DMT much more patient-friendly. You'll hear about the blood test for measuring a biomarker that can predict future MS disease worsening that has just gained approval in the European Union. And we'll tell you where to find the video replay of Mobility Challenges in Progressive MS, the most recent webcast hosted by the International Progressive MS Alliance. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Lifestyle changes that will improve your quality of life  :22 Researchers receive a grant to develop a better way to transplant stem cells  1:30 Subcutaneous Ocrevus has been approved in the European Union  3:50 Blood test to measure a biomarker that can predict future MS disease worsening receives approval in the European Union 5:35 Catch the video replay of the latest Progressive MS Alliance webcast  7:13 Dr. Lisa Doggett offers strategies for making lifestyle choices that will make a difference in your quality of life  8:20 Share this episode  26:50 Next Week: Dr. Jaime Imitola introduces us to VISIBL-MS  27:10 Have you downloaded the free RealTalk MS app?  27:39 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/357 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com VIDEO REPLAY of the International Progressive MS Alliance Global Webcast: Mobility Challenges in Progressive MS https://youtube.com/watch?v=YGA-2k9JCLg&t=14s Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 357 Guests: Dr. Lisa Doggett Privacy Policy  

Research is the engine that drives the future. And participating in MS research is not only vital to improving scientists' understanding of multiple sclerosis, it's also empowering. And the really good news is that you can participate in MS research from the comfort of your own home. My guest this week is the Managing Director of the North American Research Committee on Multiple Sclerosis, Dr. Robert Fox. And we're taking a deep dive into the NARCOMS patient registry. We'll also tell you about the latest version of AlphaFold, a highly advanced artificial intelligence model designed to help scientists design new drugs and target disease more effectively. Evidence shows that the Epstein-Barr Virus (EBV) triggers MS. We're reviewing the results of a study that may help scientists better understand the relationship between EBV and MS.  The International Progressive MS Alliance upcoming webcast, Mobility Challenges in Progressive MS, takes place this Thursday, June 20th. Find out where you can register and why you won't want to miss this! And we're just 6 weeks away from Crush MS, a fundraising event in Napa Valley, California that raises money to support MS research. I'll be there, and I hope you can join me! We're sharing all the details. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: The NARCOMS Patient Registry  :22 The most advanced AI on earth is focused on discovering new medications  1:40 Researchers learn that Epstein-Barr Virus re-activates and drives inflammation during an MS relapse  4:00 The Progressive MS Alliance hosts a live global webcast this Thursday, June 20th!  7:17 Crush MS is just 6 weeks away  8:39 Dr. Robert Fox takes us on a deep dive into the NARCOMS patient registry  10:08 Share this episode  26:12 Next Week: A special conversation with National MS Society President and CEO, Cyndi Zagieboylo  26:33 Have you downloaded the free RealTalk MS app?  27:17 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/355 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com The NARCOMS Patient Registry https://www.narcoms.org STUDY: Multiple Sclerosis Patient-Derived Spontaneous B Cells Have Distinct EBV and Host Gene Expression Profiles In Active Disease https://nature.com/articles/s41564-024-01699-6 REGISTER for the International Progressive MS Alliance Global Webcast: Mobility Challenges in Progressive MS https://msif.org/webcast-mobility Get Tickets for Crush MS https://www.crushms.org Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 355 Guests: Dr. Robert Fox Privacy Policy  

In past episodes of this podcast, we've discussed disparities in healthcare. We've looked at evidence that shows members of historically underserved communities who are living with MS can face a more severe disease course. We've looked at studies that have shown some members of these racial and ethnic minority groups don't do as well on disease-modifying therapies, and their MS progresses more quickly. It's often been speculated that the reason behind these disparities is based on genetics -- that members of minority communities who are living with MS are genetically predisposed to experiencing a more severe disease course.  My guest in this episode is Dr. Annette Langer-Gould, and Dr. Langer-Gould comes armed with evidence that points to a completely different set of answers for the cause of racial and ethnic disparities in MS disease severity and progression. We're also sharing registration details for the National MS Society's MS Activist Rally on April 25th! We'll tell you about an inverse vaccine that prevents the mouse model of MS (and we'll explain what an inverse vaccine is!) You'll find out where you can find the just-released video progress report from the International Progressive MS Alliance. We'll explain just-published results from an analysis that shows why anti-diabetic and weight-loss drugs like Ozempic, Jardiance, and Trulicity may be repurposed as MS therapies. And we're sharing study results with both good news and not so great news when it comes to being diagnosed and treated for MS in a timely manner. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: We're exploring the reason that members of underserved minority populations who are living with MS often experience a more severe disease course  :22 The MS Activist Rally is happening on 4/25!  1:28 An inverse vaccine prevents the mouse model of MS  3:49 The International Progressive MS Alliance has released their 2024 progress report  6:13 Can weight-loss drugs be repurposed as MS therapies?  7:33 A study shows that getting diagnosed and treated for MS is dependent upon your country's healthcare system  10:26 Dr. Annette Langer-Gould has a sobering answer as to why some members of minority communities who are living with MS experience a more severe disease course  14:48 Share this episode  31:31 Have you downloaded the free RealTalk MS app?  31:51 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/346 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com REGISTER for the MS Activist Rally https://events.zoom.us/ev/Ame2jWSuHmriG94cyQmlWHr45mgnzxkDv8oMZRGsrS3ZxiSj5rro~Anqb3dHg3ewiz4KNHn2Ena4bgli_WXlza_zcygZN3GinnleB6rO15OCzGQ VIDEO: International Progressive MS Alliance 2024 Progress Report https://www.youtube.com/watch?v=4ojRaLp_J1w STUDY: Exploring the Association Between Weight Loss-Inducing Medications and Multiple Sclerosis: Insights from the FDA Adverse Event Reporting System Database https://journals.sagepub.com/doi/10.1177/17562864241241383 STUDY: Disease-Modifying Therapy Initiation Patterns in Multiple Sclerosis in Three Large Populations https://journals.sagepub.com/doi/10.1177/17562864241233044 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 346 Guest: Dr. Annette Langer-Gould Privacy Policy  

We often discuss the results of MS research studies on this podcast. In order to get to those results, people living with MS have to step up and volunteer to participate. This week, you'll meet Chiquita Shepard-Knight and Earl Sneed, two participants in the TEAAMS study. Chiquita and Earl will discuss how they discovered the TEAAMS study, what motivated them to get involved, what their experience as study participants was like, and what the results of the study were for them. We'll also take you to Capitol Hill as we share conversations that we had during Hill Day at the National MS Society's Public Policy Conference.  It's MS Awareness Month, and we're sharing new videos that feature interviews with leading MS experts along with the thoughts and reactions of people living with MS. And we'll tell you where you can catch the video replay of the International Progressive MS Alliance's webcast on emerging treatments for progressive MS. We have a lot to talk about! Are you ready for RealTalk MS??! Tomorrow! The ACTRIMS Post-Forum Patient-Centered Webinar  :22 This Week: The patient perspective on participating in an MS research study  1:38 Live! From the Natinal MS Society's Public Policy Conference  2:28 People with MS weign in on the impact of several ECTRIMS presentations  10:17 Catch the video replay of the International Progressive MS Alliance webcast  11:35 Chiquita Shepard-Knight and Earl Sneed discuss their experience participating in the TEAAMS study   12:11 Share this episode  27:18 Have you downloaded the free RealTalk MS app?  27:38 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/342 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com REGISTER: ACTRIMS Post-Forum Patient-Centered Webinar https://fs2.formsite.com/1FItkk/tgx8tu3xg0/index VIDEO: Dr. Jiwon Oh shares encouraging results from an extension study of Tolebrutinib, an investigational disease-modifying therapy. Then, two people living with MS share their thoughts about clinical trials and a precision medicine approach to treating MS https://youtu.be/eWoZLF4bZmo VIDEO: Dr. Anthony Feinstein discusses the outcome of the CogEx study, Then, two people living with MS share their thoughts about the impact of this study https://www.youtube.com/watch?v=UtGtCnNkYOY VIDEO: Dr. Annette Langer-Gould discusses the impact of other health conditions on people living with MS. Then, two people living with MS share their thoughts and experiences of  managing their MS along with additional health conditions https://www.youtube.com/watch?v=J83jlqMbsZo VIDEO: Dr. Daniel Ontaneda discusses how artificial intelligence will impact MS treatment. Then, two people living with MS share their thoughts on the potential impact of AI on MS treatment and the future patient experience https://www.youtube.com/watch?v=_fRLW69Xc1A VIDEO: Dr. Robert Motl discusses the benefits of exercise for people living with MS. Then, two people living with MS share their thoughts on how exercise has impacted their MS journey https://www.youtube.com/watch?v=oZDdp8JumFg VIDEO: International Progressive MS Alliance Webcast Replay: Emerging Treatments for Progressive MS https://www.youtube.com/watch?v=W4hxtl38MBQ The TEAAMS Study https://projectteaams.ahs.uic.edu Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 342 Guests: Chiquita Shepard-Knight and Earl Sneed Privacy Policy

You've probably heard me say more than once that the things people affected by MS want most -- access to quality healthcare, affordable prescription medications, and funding for MS research -- are, to a large extent, all functions of public policy. The people who decide whether we get these things are our elected officials. That's why advocacy is so critically important. The National MS Society's Public Policy Conference gets underway on March 4th, and joining me with a preview of this year's conference is the MS Society's Vice-President of Advocacy, Steffany Stern. We're also taking a deep dive into a paper just published by a group of MS experts detailing the current status of progressive MS research, identifying lessons learned along the way, and calling out the remaining challenges to better understanding MS progression.  We're sharing the details of how and where to register for this week's global webcast being hosted by the International Progressive MS Alliance. And I'm remembering my wife, Jeanne, on the fourth anniversary of her passing. We have a lot to talk about! Are you ready for RealTalk MS??! Jeanne's Story  :22 This Week: Inside MS advocacy and this year's Public Policy Conference  8:36 Experts publish an update on progressive MS research, identify lessons learned, and call out the  remaining challenges  9:35 The International Progressive MS Alliance hosts a global webcast this Thursday  17:22 MS Society's Vice-President of Advocacy, Steffany Stern, gives us a peek at this year's Public Policy Conference   18:54 Share this episode  31:51 Have you downloaded the free RealTalk MS app?  32:10 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/338 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society: Become an MS Activist https://nationalmssociety.org/advocacy PAPER: Clinical Trials for Progressive Multiple Sclerosis: Progress, New Lessons Learned, and Remaining Challenges https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(24)00027-9/abstract RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee  https://realtalkms.com/280 RealTalk MS Episode 193: Managing the Emotional Fallout of the Pandemic with Dr. Gayle Lewis https://realtalkms.com/193 WEBCAST: New Treatments for Progressive MS: Recent Advances and Promising Research https://www.msif.org/treatments-webcast/ Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 338 Guest: Steffany Stern Privacy Policy

If you remember your Economics 101 class, the introduction of generic and biosimilar drugs should cause prices to drop. Yet, when it comes to MS disease-modifying therapies that isn't always the case.  MS Navigator Robin LaRue joins me this week to discuss how to manage the sometimes crazy costs of MS prescription medications. We're also sharing results from a study that show there is absolutely no association between consuming dairy and gluten products and MS disease activity. We'll tell you about two different studies that suggest that non-pharmaceutical interventions may be effective in lessening MS fatigue. We're sharing results from a trial that reveal an innovative approach to supporting MS caregivers. And we'll tell you about 4.6 million euro in new funding from the International Progressive MS Alliance that will go toward research focused on developing new treatments for progressive MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Managing the cost of MS medications  :22 STUDY: No association between consuming dairy and gluten products and MS disease activity  1:42 STUDY: SMS-messaging is shown to improve MS-related fatigue  4:50 STUDY: Talk therapy is shown to improve MS-related fatigue  8:36 STUDY: Remote coaching and online information improves the well-being of MS caregivers  10:43 International Progressive MS Alliance announces new research funding  13:32 MS Navigator Robin LaRue discusses how to manage the cost of MS prescription medications   15:57 Share this episode  27:48 Have you downloaded the free RealTalk MS app?  28:09 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/332 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com STUDY: Dairy and Gluten in Disease Activity in Multiple Sclerosis https://journals.sagepub.com/doi/10.1177/20552173231218107 STUDY: Text Messaging Intervention for Fatigue Self-Management in People with Stroke, Spinal Cord Injury, and Multiple Sclerosis: A Pilot Study https://sciencedirect.com/science/article/abs/pii/S1936657423001310?via%3Dihub STUDY: Effectiveness of a Blended Booster Programme for the Long-Term Outcome of Cognitive Behavioural Therapy for MS-Related Fatigue: A Randomized Controlled Study https://journals.sagepub.com/doi/full/10.1177/13524585231213258 STUDY: Effect of 2-Arm Intervention on Emotional Outcomes in Informal Caregivers of Individuals with Multiple Sclerosis: A Randomized Pilot Study Trial https://meridian.allenpress.com/ijmsc/article/25/6/252/495534/Effect-of-2-Arm-Intervention-on-Emotional-Outcomes International Progressive MS Alliance https://progressivemsalliance.org Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 332 Guest: Robin LaRue Privacy Policy

According to the CDC, 36 million falls are reported each year, resulting in 3 million adults being transported to the Emergency Room and 32,000 adults dying from their falls. Studies have shown that, in any six-month period, more than 50% of the people living with MS fall at least once, and 30% fall multiple times. As falls at home are common, occupational therapist Tracy Carrasco joins me to share tips and strategies for making your home safe and accessible. We're also sharing a research roundup featuring results from a few different clinical trials that are focused on the impact of diet on MS. And that includes the Swank diet, the Wahls diet, the Mediterranean diet, and a simple low-fat diet. We'll tell you about a novel study that explored the economic impact of an Epstein-Barr Virus vaccine on the cost of MS care in Australia. If you're living with MS, we have your invitation to participate in the Patient Reported Outcomes for Multiple Sclerosis (PROMS) initiative survey. And we'll tell you how you can catch the video replay of the International Progressive MS Alliance global webcast on research and treatment for cognitive challenges in progressive MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Some of the things I'm thankful for  :22 Research Roundup: The impact of diet on MS  2:40 Survey results show how an EBV vaccine could impact the cost of MS care in Australia  9:03 If you're living with MS, here's your invitation to participate in the PROMS initiative online survey  12:22 How to catch the video replay of the International Progressive MS Alliance global webcast about research and treatment for cognitive challenges in progressive MS 13:38 Tracy Carrasco shares tips for making your home safe and accessible 15:25 Share this episode  27:26 Have you downloaded the free RealTalk MS app?  27:46 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/325 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com STUDY: A Low-Fat Diet Improves Fatigue in Multiple Sclerosis: Results from a Randomized Controlled Trial https://journals.sagepub.com/doi/10.1177/13524585231208330 STUDY: Diet-Induced Changes in Functional Disability are Mediated by Fatigue in Relapsing-Remitting Multiple Sclerosis: A Secondary Analysis of the WAVES Randomized Parallel-Arm Trial https://journals.sagepub.com/doi/full/10.1177/20552173231209147 STUDY: Exploring the Cost-Effectiveness of EBV Vaccination to Prevent Multiple Sclerosisin an Australian Setting https://jnnp.bmj.com/content/early/2023/11/02/jnnp-2023-332161 PARTICIPATE: The PROMS Initiative Survey https://proms-initiative.org/survey-proms VIDEO: Cognitive Challenges in Progressive MS https://youtube.com/watch?v=bN26GrRZMts Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 325 Guest: Tracy Carrasco Privacy Policy

More than 70,000 U.S. veterans are living with MS. That's why the only federal funding specifically earmarked for MS research comes from the U.S. Department of Defense. It's why the U.S. Department of Veterans Affairs has established the Multiple Sclerosis Centers of Excellence. And it's why, in 2019, the National MS Society established a strategic partnership with the U.S. Department of Veterans Affairs. This week, we're saluting the men and women of our armed services, and we're highlighting some of the resources available to U.S. veterans who are living with MS. Izzy Abbass, the Co-Chair of the Paralyzed Veterans of America MS Committee, joins me to discuss all the ways the PVA assists U.S. veterans in obtaining their VA benefits. We're also sharing the results of a study that compared the efficacy of being treated with autologous hematopoietic stem cell transplantation (aHSCT) and being treated with a high-efficacy disease-modifying therapy.  We'll tell you about the results of a study that may begin to explain why African Americans who are living with MS often experience a more severe disease course. We'll give you the details about where and how to register for this Thursday's International Progressive MS Alliance's global webcast that's focused on treatments and new research for cognitive challenges in progressive MS. And actress Jamie-Lynn Sigler is also joining me this week to talk about her MS journey and to share some news about a new project that she has developed for people living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Resources for U.S. Veterans living with MS  :22 My guest, Izzy Abbass, explains how the PVA assists U.S. Veterans with MS in receiving their VA benefits  2:41 A study compared the efficacy of autologous hematopoietic stem cell transplantation (aHSCT) with a high-efficacy disease-modifying therapy  11:21 Results of a study may begin to explain why African Americans who are living with MS often experience a higher level of disease activity and faster disability progression  14:36 This Thursday, the International Progressive MS Alliance is hosting a global webcast exploring treatments and research focused on cognitive challenges in progressive MS  17:31 Jamie-Lynn Sigler discusses her new guide for people living with MS  19:13 Share this episode  30:25 Have you downloaded the free RealTalk MS app?  30:45 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/323 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society: Resources for U.S. Veterans with Multiple Sclerosis https://nationalmssociety.org/Resources-Support/Find-Support/Veterans-with-Multiple-Sclerosis U.S. Department of Veteran Affairs: Multiple Sclerosis Centers of Excellence https://www.va.gov/ms Paralyzed Veterans of America: Multiple Sclerosis Resources https://pva.org/research-resources/multiple-sclerosis STUDY: Autologous Hematopoietic Stem Cell Transplantation is Superior to Alemtuzumab in Patients with Highly Active Relapsing Multiple Sclerosis and Severe Disability https://sciencedirect.com/science/article/pii/S2211034823005977 STUDY: African American Patients with Multiple Sclerosis (MS) Have Higher Proportions of CD19+ and CD20+ B-Cell Lineage Cells in Their Cerebrospinal Fluid than White MS Patients https://sciencedirect.com/science/article/abs/pii/S2211034823005485 REGISTER for Thursday's Global Webcast on Cognitive Challenges in Progressive MS https://msif.org/cognitive-webcast Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 323 Guests: Izzy Abbass and Jamie-Lynn Sigler Privacy Policy

The ability to speak is something so basic to our day-to-day lives that you may not ever stop to consider it until you realize something about your speech may be changing. And swallowing is something that's so automatic, we take it for granted. Until, that is, something changes, and you find yourself choking on a sip of water. Speech and swallowing problems are fairly common MS symptoms. And joining me to discuss some of the most common speech and swallowing disorders people with MS might encounter, and how working with a speech pathologist can make a real difference in tackling those speech and swallowing issues is an internationally recognized medical Speech-Language Pathologist and Multiple Sclerosis Certified Specialist, Dr. Marissa Barrera. We're also sharing news about an updated guidance that's been published by a group of MS experts to help healthcare professionals avoid misdiagnosing MS. We'll tell you about results from a small study that demonstrate the potential risks associated with requiring prior authorization from insurance companies for disease-modifying therapies which have been prescribed to people newly diagnosed with MS. The International Progressive MS Alliance has published a report on the Scientific Congress it convened in June. We'll tell you where you can download your copy. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Improving speech and swallowing issues in MS  :22 An international group of experts has published an updated guidance for neurologists and other healthcare professionals on how to distinguish MS from other neurological look-alikes  1:39 Results from a small study demonstrate that requiring prior authorization for disease-modifying therapies poses potential health risks for people newly diagnosed with MS  3:12 The International Progressive MS Alliance has published a report on the Scientific Congress it convened this past June  8:29 Dr. Marissa Barrera discusses some of the common speech and swallowing disorders people with MS might encounter   9:53 Share this episode  34:51 Have you downloaded the free RealTalk MS app?  35:10 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/309 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Differential Diagnosis of Multiple Sclerosis: An Updated Consensus Approach https://thelancet.com/journals/laneur/article/PIIS1474-4422(23)00148-5/fulltext STUDY: The Impact of Insurance Restrictions in Individuals Newly DIagnosed with Multiple Sclerosis https://meridian.allenpress.com/ijmsc/article/doi/10.7224/1537-2073.2022-069/494514/The-Impact-of-Insurance-Restrictions-in Report from the International Progressive MS Alliance 2023 Scientific Congress https://www.progressivemsalliance.org/wp-content/uploads/2023/07/230719-Alliance-Scientific-Congress-Report-July-2023.pdf RealTalk MS Episode 303: The International Progressive MS Alliance Scientific Congress (Part 1) https://realtalkms.com/303 RealTalk MS Episode 304: The International Progressive MS Alliance Scientific Congress (Part 2) https://realtalkms.com/304 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 309 Guest: Dr. Marissa Barrera Privacy Policy

Just a couple of weeks ago, the International Progressive MS Alliance convened its fourth Scientific Congress in Vienna, Austria, bringing together nearly 200 international scientists and MS leaders, including people affected by progressive MS, to report and review the progress being made in developing new, effective treatments for progressive MS. In Part 2 of our coverage, we're taking you back inside this Scientific Congress, where you'll hear from some of the top MS researchers in the world who participated in this game-changing event. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: More from the International Progressive MS Alliance Scientific Congress  :22 Professor Xavier Montalban shares his perspective on the role of the Alliance and the presentations that we saw and heard on Day One of the Scientific Congress  1:32 Professor David Leppert explains how a biomarker for MS progression will impact MS research and MS treatment  8:04 Dr. Anne Cross discusses some of the presentations that we saw and heard on Day One of the Scientific Congress   16:20 Philanthropist Monia Joblin explains why the work of the International Progressive MS Alliance is important to her and to other families affected by progressive MS  26:13 Share this episode  39:19 Have you downloaded the free RealTalk MS app???  39:40 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/304 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com The International Progressive MS Alliance https://progressivemsalliance.org RealTalk MS Episode 303: The International Progressive MS Alliance Scientific Congress (Part 1) https://realtalkms.com/303 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 304 Guests: Prof. Xavier Montalban, Prof. David Leppert, Dr. Anne Cross, and Monia Joblin Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

Last week, the International Progressive MS Alliance convened its fourth Scientific Congress in Vienna, Austria, bringing together nearly 200 international scientists and MS leaders, including people affected by progressive MS, to report and review the progress being made in developing new, effective treatments for progressive MS. In Part 1 of our coverage, we're taking you inside this Scientific Congress, where you'll hear from some of the top MS researchers in the world who participated in this game-changing event. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: The International Progressive MS Alliance Scientific Congress  :22 Dr. Robert Fox shares an overview of the Alliance and a preview of this Scientific Congress  3:17 Vanessa Fanning explains the role of the Alliance People Affected by MS Engagement Coordination Team  16:49 Professor Tanja Kuhlmann discusses the critical importance of identifying the mechanisms that drive MS progression  26:01 Remyelination is a natural process. Professor Robin Franklin explains why it stops working for people with MS  35:24 Professor Olga Ciccarelli tells us where we are in understanding remyelination and shares some of her cutting-edge research  41:48 Share this episode  53:01 Please remember to take our listener survey!  53:21 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/303 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com The International Progressive MS Alliance https://progressivemsalliance.org RealTalk MS Episode 279: A New Framework for Researching, Diagnosing, and Treating MS with Professor Tanja Kuhlmann https://realtalkms.com/279 RealTalk MS Episode 280: How the Proposed Framework for Diagnosing and Treating MS Will Affect You with Dr. Tim Coetzee  https://realtalkms.com/280 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 280 Guests: Dr. Robert Fox, Vanessa Fanning, Prof. Tanja Kuhlmann, Prof. Robin Franklin, and Prof. Olga Ciccarelli Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

Welcome to the 300th episode of RealTalk MS! Yikes! In last week's episode of the podcast, Dr. Bruce Bebo walked us through the latest research on the prevalence of MS in the United States, and the data serves as a clear reminder that anyone can get MS.  However, not everyone with MS receives the same quality of care. My guest today is clinician-researcher Dr. Lilyana Amezcua, and we're discussing her work in exploring healthcare disparities among minority populations. In addition to celebrating our 300th episode, we're also celebrating World MS Day! We'll let you know where you can join the virtual festivities. And, as our RealTalk MS Listener Survey ends, we're announcing the winner of a $100 Amazon Gift Card. Can Do MS is hosting a day-long in-person and virtual More About MS program this Friday, June 2. We'll give you the details and tell you how you can register for this free event. And the International Progressive MS Alliance has announced a large-scale research program focused on developing solutions to some of the most challenging symptoms that people living with progressive MS face. We're sharing the details. We have a lot to talk about! Are you ready for RealTalk MS??! Welcome to our 300th episode!  :25 It's World MS Day!  1:55 Congratulations to the winner of a $100 Amazon gift card!  2:56 Details and registration info for the Can Do MS More About MS Program  3:43 The International Progressive MS Alliance announces a large-scale research program  5:17 Dr. Lilyana Amezcua discusses healthcare disparities among minority communities   7:51 Share this episode  32:12 Thanks for listening, and here's to the next 300!!  32:32 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/300 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com World MS Day on the Web https://worldmsday.org World MS Day on Facebook https://facebook.com/worldmsday REGISTER for the Can Do MS More About MS Program https://cando-ms.org/more-about-ms-registration Prioritizing Progressive MS Rehabilitation Research: A Call from the International Progressive MS Alliance https://journals.sagepub.com/doi/pdf/10.1177/1352458521999970 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 300 Guests: Dr. Lilyana Amezcua Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

If you've listened to this podcast before, you already know that we avoid hype, and we stick to talking about evidence-based science. So, let me say right up front -- today, the cause of multiple sclerosis is unknown. However, a research team has identified a bacterial toxin that may prove to be the cause of MS onset as well as MS relapses. Joining me for an exclusive conversation about this discovery is Dr. Timothy Vartanian, who leads the team that made the discovery, and Dr. Richard Rudick, whose career has focused on experimental therapeutics for MS, playing a key role in the development of both Avonex and Tysabri. We're also talking about a stem cell therapy called MSC-NP that, in a Phase 1 clinical trial, delivered positive outcomes among people living with progressive MS. We'll tell you about a study that demonstrated why EDSS alone does not accurately define an individual's MS journey. We're sharing news from the International Progressive MS Alliance about a new research pipeline that will focus on improving well-being for people living with progressive MS. And we'll tell you where you can catch a replay of the International Progressive MS Alliance's latest webcast, Developing Treatments to End MS Progression. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Is this the cause of MS?  :22 STUDY: MSC:NP, a stem cell therapy for MS, delivers a positive outcome among people living with progressive MS  1:33 STUDY: Does EDSS tell the whole story of your MS status?   5:03 The International Progressive MS Alliance funds a research pipeline focused on improving well-being among people living with progressive MS  8:42 Webcast Replay: Developing Treatments to End MS Progression   10:24 Dr. Richard Rudick and Dr. Timothy Vartanian discuss a new discovery that may lead scientists to the cause of MS   11:36 Share this episode  29:25 Have you downloaded the free RealTalk MS app?  29:46 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/292 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com STUDY: Epsilon Toxin-Producing Clostridium Perfringens Colonize the MS Gut and Epsilon Toxin Overcomes Immune Privilege https://www.jci.org/articles/view/163239 STUDY: Mesenchymal Stem Cell-Derived Neural Progenitors Attenuate Proinflammatory Microglial Activation Via Paracine Mechanisms https://futuremedicine.com/doi/10.2217/rme-2023-0005 STUDY: Cognitive Impairment, Fatigue and Depression in Multiple Sclerosis: Is There a Difference Between Benign and Non-Benign MS? https://msard-journal.com/article/S2211-0348(23)00134-7/fulltext#%20 International Progressive MS Alliance: Well-Being in Multiple Sclerosis Research Funding Opportunity https://progressivemsalliance.org/2023/03/15/well-being-in-multiple-sclerosis-research-funding-opportunity Prioritizing Progressive MS Rehabilitation Research: A Call from the International Progressive MS Alliance https://journals.sagepub.com/doi/pdf/10.1177/1352458521999970 Webcast Replay: Developing Treatments to End MS Progression https://www.facebook.com/watch/live/?ref=watch permalink&v=748824966910470 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 292 Guests: Dr. Richard Rudick and Dr. Timothy Vartanian Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

If you're a regular listener, you've heard me say that the things that people affected by MS want the most -- access to quality healthcare, affordable prescription medications, and funding for MS research -- are, to a large extent, functions of public policy. The people who decide whether we get these things are our elected officials at both the state and federal level. That's why advocacy should be a high priority for everyone affected by MS. Make no mistake. MS advocacy delivers real results. Joining me in exploring how advocacy drives changes that improve the lives of people living with MS, and why you may want to consider becoming an MS activist, are Holly Pendell, the National MS Society's Associate Vice-President of Advocacy and MS activist Angel Hardy Heinz. Ready to learn more about MS advocacy? You can take the next step from the comfort of your own home. We're sharing the details of next week's virtual MS Activist Rally.  We'll tell you about a study that found a Mediterranean Diet could have a positive impact on cognition among people living with MS You'll learn about a clinical trial that's currently underway to determine whether aerobic exercise can promote myelin repair. We're sharing the details about an upcoming International Progressive MS Alliance webcast that's focused on developing treatments for progressive MS. And we'll tell you how high school seniors or college graduates who are affected by MS can apply for an Oscar the MS Monkey academic scholarship. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: We're all about MS advocacy  :22 The virtual MS Activist Rally takes place March 28. Are you registered???  5:22 STUDY RESULTS: Mediterranean Diet Is associated with cognition in MS   8:01 A clinical trial is underway to determine whether aerobic exercise can promote myelin repair  9:43 The International Progressive MS Alliance is hosting a webcast focused on developing treatments for progressive MS  11:01 Oscar the MS Monkey is accepting academic scholarship applications from high school seniors and college graduates who are affected by MS  11:57 Holly Pendell, the National MS Society's Associate Vice-President of Advocacy and MS activist Angel Hardy Heinz discuss how advocacy makes a real difference in the lives of people affected by MS, and how you can get involved    13:49 Share this episode  27:12 Have you downloaded the free RealTalk MS app?  27:32 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/290 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society MS Activist Rally registration https://p2a.co/Rally2023 STUDY:  Mediterranean Diet is Associated with Cognition in Multiple Sclerosis https://aan.com/MSA/Public/Events/AbstractDetails/52954 Webcast: Developing Treatments to End MS Progression registration https://msif.org/progressiveMSwebcast Oscar the MS Monkey Academic Scholarship Application http://mroscarmonkey.org/site/Scholarship%20Application%202023.pdf Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 290 Guests: Holly Pendell and Angel Hardy Heinz Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

Whether we adults admit it or not, kids see everything. That includes seeing a parent or other family member who's living with MS. And because kids don't have an understanding of neurological conditions, they use their imaginations to fill in the blanks. That can very quickly take them down a rabbit-hole that's far scarier than the reality of living with MS. So, when do you talk to your kids about MS? And what do you say? Licensed social worker and behavioral specialist Erin Martin joins me to talk about talking to kids about your MS. If you're living with MS and you still smoke, we're sharing results of a study that you may want to carefully consider. We'll also share the results of two different studies that might help inform your COVID-19 strategy if you're on a b-cell depleting disease-modifying therapy. We'll let you know how you can catch the video replay of an excellent webinar presented by the International Progressive MS Alliance. We'll share the details about how a group of international experts discovered a method for measuring remyelinated MS lesions (And we'll tell you why that's become important right now) We'll also share some encouraging results of a study that looked at the impact of estriol and Copaxone on women living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! Talking to kids about MS   :22 Smoking is shown to affect MS progression  1:29 COVID-19 vaccines, breakthrough infections, and Evusheld  3:44 Catch the video replay of the International Progressive MS Alliance Webinar  8:31 A team of international experts discover a way to measure myelin repair  9:08 Combination of Estriol plus Copaxone is shown to reduce neurofilament light chain levels  11:57 Behavioral specialist Erin Martin discusses talking about MS with your kids  14:27 Share this episode  29:03 Download the RealTalk MS app for your iOS or Android device   29:24 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/254 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance STUDY: The Effect of Smoking on Long-Term Grey Matter Atrophy and Clinical Disability in Patients with Relapsing-Remitting Multiple Sclerosis https://nn.neurology.org/content/9/5/e200008 STUDY: Tixagevimab and Cligavimab (Evusheld) Boost Antibody Levels to SARS-COV2 in Patients with Multiple Sclerosis on B-Cell Depleters https://sciencedirect.com/science/article/pii/S2211034822004163 VIDEO: Solving the Mystery of Progression: The Key to New Treatments for Progressive MS https://youtube.com/watch?v=U5sm54HSBpY STUDY: A New Advanced MRI Biomarker for Remyelinated Lesions in Multiple Sclerosis https://onlinelibrary.wiley.com/doi/10.1002/ana.26441 STUDY: Decreased Neurofilament Light Chain Levels in Estriol-Treated Multiple Sclerosis https://onlinelibrary.wiley.com/doi/10.1002/acn3.51622 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 254 Guest: Erin Martin Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

Jon Strum's wife, Jeanne, was an avid biker, hiker, and writer when she was diagnosed with Progressive MS. Almost immediately, she became so severely disabled that Jon stopped working and became Jeanne's carer and advocate. He continued in this role until Jeanne passed in February 2020. Part of Jon's advocacy was (and continues to be) hosting the popular RealTalk MS podcast. As you'll hear, Jon started the podcast while sitting on a scientific committee as a member of the International Progressive MS Alliance, to bridge the gap between patients and caregivers and the scientific community. Since its launch in 2017 and over 200 episodes later it has been downloaded more than 1,000,000 times by listeners in over 100 countries around the world.Jon's devotion to his wife is moving and unquestionable. But so is his desire and commitment to advocating for all people living with Multiple Sclerosis.Listen in to my interview with this wonderful man and find out about all the ways that you can advocate for people with MS and affect change!Topics covered in this episode include:The story of Jeanne's diagnosis, and Jon's journey into caregiving and advocacyJon and Jeanne's experiences with health insurance, the impact on their finances, and the heartbreaking decision Jon had to make for Jeanne's care Why Jon feels that people with more progressive forms of MS can feel forgotten by the scientific community, and why he started the RealTalk MS PodcastJon's partnership with the National MS SocietyThings that are on the legislative horizon for people in the US with MS, and how you can get involved and put pressure on your representatives!Full show notes and resources at https://fumsnow.com/fums109/ See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Tim Coetzee is the Chief Advocacy, Services and Science Officer at the National Multiple Sclerosis Society. Tim leads all efforts focused on state and federal advocacy, marketing and communications, services and connection programs. He leads staff for the International Progressive MS Alliance – a global collaboration of MS Societies, scientists, the pharmaceutical industry and people with progressive MS. Join Jenn and Tim as they discuss why advocacy matters and the multiple ways the NMSS works positively for the MS community. Join the conversation on our MS forums: https://www.multiplesclerosisnewstoday.com/forums/ Follow us on social media: Instagram - https://www.instagram.com/msnewstoday/ Facebook - https://www.facebook.com/multiplesclerosisnewstoday Twitter - https://www.twitter.com/msnewstoday For more news on Multiple Sclerosis visit: https://www.multiplesclerosisnewstoday.com/

A decade ago, the International Progressive MS Alliance didn't exist. Today, it can be credited with changing the global conversation about progressive MS research, elevating the progressive MS research agenda and moving the work forward. A few weeks ago, the Alliance announced the details of an ambitious strategic plan that will guide their work over the next 3 years.  Joining me to talk about the new goals that were set by the Alliance, and what that means for people affected by progressive MS, is the Chair of the Alliance's Scientific Steering Committee, Dr. Robert Fox. The MS International Federation conducted a survey and we're wondering whether the responses have raised a larger question? We're also talking about a study that showed how an online mindfulness program significantly improved depression for people living with MS. We're sharing study results that show your nose knows when your DMT is working well for you. We'll also share the details about an exciting undertaking at the University of Colorado that may lead to treating people so that they completely avoid the symptoms of MS. And we'll tell you about a small trial that demonstrated the effectiveness of an experimental stem cell therapy as a potential treatment for progressive MS. We have a lot to talk about! Are you ready for RealTalk MS??! International Progressive MS Alliance unveils a new 3-year strategic plan  :22 Survey results raise a larger question -- How do we share MS research news with people affected by MS???  1:04 Online mindfulness provides significant improvement for managing depression among people with MS    16:14 Using your nose to determine the efficacy of your disease-modifying therapy  8:33 NeuroGenesis cell therapy shows promise as a potential treatment for progressive MS  14:14 Dr. Robert Fox discusses what's next for the International Progressive MS Alliance  17:28 Share this episode  28:07 Have you downloaded the RealTalk MS app?   28:27 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/239 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jonstrum@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance International Progressive MS Alliance https://progressivemsalliance.org STUDY: A Randomized Controlled Trial of a Web-Based Mindfulness Programme for People With MS With and Without a History of Recurrent Depression https://journals.sagepub.com/doi/10.1177/13524585211068002 STUDY: Olfactory Threshold Predicts Treatment Response in Relapsing Multiple Sclerosis https://journals.sagepub.com/doi/10.1177/1354285221079744 STUDY: Effects of Mesenchymal Stem Cell Transplantation on Cerebrospinal Fluid Biomarkers in Progressive MS https://academic.oup.com/stcltm/article/11/1/55/6528889 Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 239 Guests: Dr. Robert Fox Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

Many of our local, state, and national leaders seem to be declaring that the pandemic has ended and it's back to business as usual. But if you're living with MS, how comfortable are you with the idea of being out in a world where everyone isn't fully vaccinated, and mask mandates have been cancelled? Dr. Meghan Beier and Emily Reilly join me to discuss how to manage your fear and anxiety, build resilience, and deal with the emotional impact of living life in a world where COVID-19 is considered an endemic virus. Dr. Beier is an Assistant Professor of Physical Medicine and Rehabilitation and Johns Hopkins University School of Medicine and a psychologist with specialized training in health psychology, neuropsychology, and multiple sclerosis. Emily Reilly is a certified physical trainer and a National MS Society staff member on the Advocacy and Healthcare Access Team. Emily lives with MS, and we'll talk with Emily about how her life has been impacted by the pandemic and how she's found ways to cope with some challenging but all too familiar situations. We'll also share details of the new 3-year strategic plan unveiled by the International Progressive MS Alliance. We'll tell you about new investments in MS research in the U.K. You'll hear about how iConquer MS is expanding its outreach to include kids and teens living with MS and their parents. And we'll share our plans for attending the first MS research conference in person as the ACTRIMS Forum 2022 gets underway this week. We have a lot to talk about! Are you ready for RealTalk MS??! The ACTRIMS Forum 2022 begins this week  2:33 International Progressive MS Alliance Unveils a 3-Year Strategic Plan  5:38 iConquer MS expands to include pediatric MS  8:25 About our show notes  9:47 U.K. MS Society invests $1.5 million in new research  11:55 Dr. Meghan Beier and Emily Reilly discuss dealing with the emotional impact of the pandemic  14:13 Share this episode  31:12 Download the RealTalk MS app for your iOS or Android device   31:33 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/234 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jonstrum@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance Managing MS and Comorbidities with Dr. Ruth Ann Marrie https://realtalkms.com/232 International Progressive MS Alliance https://progressivemsalliance.org iConquer MS Survey for Kids and Teens Living with MS https://survey.alchemer.com/s3/6663544/Pediatric-Survey-Kids-Teens iConquer MS Survey for Parents of Kids or Teens Living with MS https://survey.alchemer.com/s3/6665289/Pediatric-Survey-Parents-Guardians iConquer MS Survey for Researchers and Healthcare Providers Working with Kids or Teens Living with MShttps://survey.alchemer.com/s3/6677381/Pediatric-MS-survey-HCPs-and-researchers Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 234 Guests: Dr. Meghan Beier and Emily Reilly Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

Since 1985 Cyndi Zagieboylo has dedicated her life's work to achieving National Multiple Sclerosis Society's vision of a world free of MS. While serving on the Society's National Board of Directors as CEO and president, Cyndi serves on the Multiple Sclerosis International Federation CEO Advisory Group and Board of Trustees. A founding member of the International Progressive MS Alliance launched in 2013, Cyndi provides leadership as chair of the executive committee. The Alliance exists to expedite the development of therapies for progressive forms of MS by connecting global resources and experts. Join the discussion as Jenn and Cyndi talk about the MS Society's many initiatives, resources, and programs. Cyndi has dedicated her life's work to achieving the National MS Society's mission of curing MS while empowering people affected by MS to live their best lives. Join the conversation on our MS forums: www.multiplesclerosisnewstoday.com/forums/ Follow us on social media: Instagram - www.instagram.com/msnewstoday/ Facebook - www.facebook.com/multiplesclerosisnewstoday Twitter - www.twitter.com/msnewstoday For more news on Multiple Sclerosis visit: www.multiplesclerosisnewstoday.com/

If you're living with MS, you know by now that quitting smoking, getting exercise, and making smart food choices have all been shown to improve your physical health and your quality of life. There's one more tool that, when necessary, can be a game-changer.  Joining me to talk about how assistive technology can help people living with MS maintain their independence and improve their quality of life are assistive technology experts Alex Burnham and Bill Binko.  We'll also share one more reason why your most important preparation for the holiday season this year is making sure you're fully vaccinated. We'll tell you about the International Progressive MS Alliance's proposal for coordinating global progressive MS research. We'll share the results of a study that shows a significant percentage of older people living with MS who discontinue their DMT experience disease worsening and progression. We'll tell you about a new grant that's been awarded to study adherence to MS oral disease-modifying therapies. And you'll hear about the results of a study that shows an association between low levels of vitamin D and cognitive dysfunction at the onset of MS. We have a lot to talk about! Are you ready for RealTalk MS??! There's a new reason to be vaccinated!  3:43 International Progressie MS Alliance's proposal for a global progressive MS research agenda   6:57 My goodbye to the Progressive MS Alliance Scientific Steering Committee  8:16 A study shows that older people who discontinue DMTs suffer disease worsening and progression  9:56 Researcher receives $100,000 to study MS oral DMT adherence  12:39 A study shows low levels of Vitamin D are associated with cognitive dysfunction at the onset of MS  15:22 Alex Burnham and Bill Binko discuss how assistive technology can be a difference-maker for people living with MS   18:51 Share this episode  37:47 Have you downloaded the free RealTalk MS app???  38:08 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/223 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS Charting a Global Research Strategy for Progressive MS -- An International Progressive MS Alliance Proposal https://journals.sagepub.com/doi/10.1177/13524585211059766 STUDY: Discontinuation of Disease-Modifying Therapies is Associated with Disability Progression Regardless of Prior Stable Disease and Agehttps://www.msard-journal.com/article/S2211-0348(21)00673-8/fulltext STUDY: Real World Adherence To, and Persistence With, Once- and Twice-Daily Oral Disease Modifying Drugs in Patients with Multiple Sclerosis: A Systematic Review and Meta-Analysishttps://bmcneurol.biomedcentral.com/articles/10.1186/s12883-020-01830-0 STUDY: Serum Vitamin D as a Marker of Impaired Information Processing Speed and Early Disability in Multiple Sclerosis Patientshttps://www.mdpi.com/2076-3425/11/11/1521/htm Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 223 Guests: Alex Burnham and Bill Binko Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

Before the availability of MRI technology in the 1980s, MS was frequently misdiagnosed or even missed completely. Today, an MRI exam is a valuable tool in diagnosing MS, following disease progression, and evaluating someone's response to their MS treatment. Recently, a team of international experts updated the MRI recommendations for people living with MS. Dr. Scott Newsome, a member of that expert panel, is joining me today to talk about some of those recommendations and to help us understand how the new recommendations will impact your next MRI exam. We're also talking about building a pediatric MS community with Emily Blosberg, the creator of Oscar the MS Monkey. We'll tell you how you can catch the replay of the International Progressive MS Alliance webcast about fatigue in progressive MS. (They're sharing some excellent tips and resources for managing fatigue!) And we'll tell you why the announcement of a study to identify the MS prodrome is very exciting news! We have a lot to talk about! Are you ready for RealTalk MS??! Progressive MS Alliance hosts a webcast about fatigue in progressive MS  2:03 About our show notes:  2:36 Meet Emily Blosberg and find out about her friend, Oscar the MS Monkey  4:18 Study of the prodromal phase of MS announced  13:59 Dr. Scott Newsome explains new MRI recommendations for MS   16:52 Share this episode  38:57 Have you checked out The MS Caregiver Conundrum?  39:18 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/220 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance National MS Society Third COVID-19 Vaccine Dose Guidance for People Living with MS https://www.nationalmssociety.org/About-the-Society/News/Additional-COVID-19-Vaccine-Dose-(Booster)-and-MS The MS Caregiver Conundrum Podcast https://mscaregiverconundrum.com International Progressive MS Alliance Webcast: Fatigue in Progressive MS https://www.youtube.com/watch?v=v99I56RCdAc Oscar the MS Monkeyhttp://www.mroscarmonkey.org/ Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 220 Guests: Emily Blosberg and Dr. Scott Newsome Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

We're celebrating the 200th episode of RealTalk MS by sitting down with Cyndi Zagieboylo, the President and CEO of the National Multiple Sclerosis Society, and looking at some of the most vital initiatives ever undertaken by the National MS Society, including the launch of the International Progressive MS Alliance, the MS Society's efforts to support diversity, equity, and inclusion throughout the MS movement and in MS clinical research, and the groundbreaking Pathways to Cures blueprint. Over the span of her 36-year career with the National MS Society, Cyndi had the opportunity to work with the Society's founder, Sylvia Lawry. During our conversation, we look back at the founding of the National MS Society in 1948, Ms. Lawry's founding of the MS International Federation in 1967, and Cyndi shares her insights into what might have been on Ms. Lawry's mind if she were with us today. We have a lot to talk about! Are you ready for RealTalk MS??! Welcome to Episode #200!  :18 A toast to each of you who have made this possible  :58 My conversation with Cyndi Zagieboylo  2:57 Share this episode  31:42 Thanks again!  32:02 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/200 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Androidhttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 200 Guests: Cyndi Zagieboylo Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

Some people call them flares, some people call them exacerbations, and some people call them MS attacks. But all those terms refer to the very same thing -- an MS relapse. What does a relapse really mean in terms of disease progression? What's the difference between a relapse and a pseudo-relapse? How does pregnancy make you less likely to experience a relapse and then more likely to experience a relapse? Dr. Michelle Cameron is joining me to answer these questions and to share some advice on how to best avoid an MS relapse. Dr. Cameron is a neurologist and physical therapist, and an associate professor in the Department of Neurology at Oregon Health & Science University. We're also sharing the details about this Thursday's Pathways to Wellness in MS program being presented by the National MS Society(it's free to register!). We'll tell you about over $1 million dollars in new progressive MS research grants that were just awarded by the International Progressive MS Alliance. If you're curious about how well-matched you and your DMT really are, we'll let you know how you can test-drive a new MS Disease-Modifying Therapy Comparison app. And we're talking about the latest addition to at-home telehealth treatment when it comes to MS rehabilitation. We have a lot to talk about! Are you ready for RealTalk MS??! National MS Society Pathways to Wellness in MS takes place this Thursday  1:24 International Progressive MS Alliance announces new research awards  2:54 International Progressive MS Alliance global webcast will feature MS experts answering your questions  5:06 Wondering about the right DMT for you? There may be an app for that!  5:46 NYU Langone Health launches at-home transcranial direct current stimulation MS rehab program  7:54 Dr. Michelle Cameron shares what you need to know about MS relapses.  11:02 Share this episode  22:48 Have a minute? Leave a rating & review for the podcast  23:09 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/197 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS National MS Society's Pathways to Wellness in MS International Progressive MS Alliance Global Webcast Disease-Modifying Therapies Comparison Tool NYU Langone Health At-Home Transcranial Direct Current Stimulation Program Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Give RealTalk MS a Rating and Review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 197 Guests: Dr. Michelle Cameron Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

Fast Takes Series - Prioritizing Progressive MS Rehabilitation Research - A Call From The International Progressive MS Alliance - Episode 24 In this episode, Dr. John DeLuca, senior vice of president for research and training talks about the International Progressive MS Alliance and the peer-reviewed Alliance article “Prioritizing progressive MS rehabilitation research: A call from the International Progressive MS Alliance” published on March 15, 2021 in the journal Multiple Sclerosis Learn more about: Dr. DeLuca at https://kesslerfoundation.org/aboutus/John%20DeLuca and the journal article at https://journals.sagepub.com/doi/10.1177/1352458521999970 Co-authors: Kathleen M Zackowski, Jennifer Freeman, Giampaolo Brichetto, Diego Centonze, Ulrik Dalgas, John DeLuca, Dawn Ehde, Sara Elgott, Vanessa Fanning, Peter Feys, Marcia Finlayson, Stefan M Gold, Matilde Inglese, Ruth Ann Marrie, Michelle Ploughman, Christine N Sang, Jaume Sastre-Garriga, Caroline Sincock, Jonathan Strum, Johan van Beek, Anthony Feinstein ================================================= Tuned into our podcast series lately? Join our listeners in 90 countries who enjoy learning about the work of Kessler Foundation. Be sure and subscribe to our SoundCloud channel “KesslerFoundation” for more research updates. Follow us on Facebook, Twitter, and Instagram. Listen to us on Apple Podcasts, Spotify, SoundCloud, or wherever you get your podcasts. This podcast was recorded on May 26, 2021 remotely and was edited and produced by Joan Banks-Smith, Creative Producer for Kessler Foundation.

With 200 million Americans having already received their COVID-19 vaccination, public health officials are warning that vaccine hesitancy is a growing challenge to our nation's ability to fully bounce back from the pandemic and resume something resembling the life we once knew.  If what you're seeing and hearing about the COVID vaccines on social media or from well-meaning friends and family is making you nervous, my guest, Dr. Dorlan Kimbrough, is joining me to set the record straight. Dr. Kimbrough is a member of the National MS Society's COVID Vaccine Guidance Task Force and we're talking about vaccine side effects among people living with MS, vaccine interactions with MS disease-modifying therapies, and other information that you should know before you go for your vaccination. We're also talking about new progressive MS research that's about to be funded by the International Progressive MS Alliance. We're sharing the good news about a DMT that's just been approved for people living with relapsing-remitting MS in England and Wales. And we'll share some of the research that was discussed last week at the American Academy of Neurology 2021 Annual Meeting. We have a lot to talk about! Are you ready for RealTalk MS??! International Progressive MS Alliance reviews research award applications  2:50    Kesimpta approved for RRMS in England and Wales  3:38 News from the AAN 2021 Annual Meeting    4:32 Dr. Dorlan Kimbrough discusses what you need to know about COVID-19 vaccines and MS  10:36 Share this episode  30:02 Have a minute? Leave a rating & review for the podcast  30:22 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email:  https://realtalkms.com/191 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS STUDY: Plasma Neurofilament Light Chain and Glial Fibrillary Acidic Protein Levels are Prognostic of Disability Worsening: A Biosignature that Helps Differentiating Active from Non-Active SPMS STUDY: Sociodemographic and Clinical Characteristics of Patients with Multiple Sclerosis by Race and Ethnicity (NARCRMS Registry) Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Give RealTalk MS a Rating and Review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 191 Guests: Dr. Dorlan Kimbrough Tags: MS, MultipleSclerosis, COVID19, COVIDVaccine, MSResearch, MSSociety, RealTalkMS Privacy Policy

MS affects almost 3 times as many women as men. Have you ever wondered why? When it comes to investigating sex differences in MS, my guest, Dr. Rhonda Voskuhl, has done more than just think about it. And her recent research may have uncovered an MS treatment for women undergoing menopause. Dr. Voskuhl is the President-elect of the International Organization for the Study of Sex Differences and the Director of the Multiple Sclerosis Program at UCLA. We're also talking about the potentially game-changing discovery of 3 new MS subtypes. And they were discovered by a machine! We'll share the results of a study that analyzed the outcomes of over 1,600 people living with MS in North America who contracted COVID-19. And we'll tell you about a new report that was issued by 30 patient organizations (including the National MS Society) that details the dangers of cheap, non-compliant health insurance plans that are being sold in the U.S. If you're looking for tools that will help you stay positive during challenging times, we'll give you the details about the slate of programs that Can Do MS is offering throughout the month of April.  We have a lot to talk about! Are you ready for RealTalk MS??! Last Call for your chance to win a $100 Amazon gift card  :22 Scientists use AI to identify 3 new MS subtypes    3:57 Study provides evidence that people with MS do as well with COVID-19 as the general population    6:51 International Progressive MS Alliance convenes meeting on COVID-19 and progressive MS  8:12 Patient organizations issue report showing the danger of non-compliant sub-standard health insurance coverage  9:02 Can Do MS programs in April focus on ways to stay positive  10:55 Dr. Rhonda Voskuhl discusses recent research that reveals a potential MS treatment for women undergoing menopause  12:45 Share this episode  34:19 It's your last chance to take the RealTalk MS Listener Survey and win a $100 Amazon gift card  34:40 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/189 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com RealTalk MS Listener Survey (Win a $100 Amazon Gift Card!) National MS Society COVID-19 Vaccine Guidance for People Living with MS MStranslate STUDY: Identifying Multiple Sclerosis Subtypes Using Unsupervised Machine Learning and MRI Data STUDY: Outcomes and Risk Factors Associated with SARS-COV-2 Infection in a North American Registry of Patients with Multiple Sclerosis REPORT: Undercovered: How "Insurance-Like" Products Are Leaving Patients Exposed CAN-DO MS Program Info and Registration Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Give RealTalk MS a Rating and Review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 189 Guests: Dr. Rhonda Voskuhl Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MStranslate, RealTalkMS Privacy Policy

About 80% of the people with relapsing-remitting MS will eventually be diagnosed with secondary progressive MS. At that point, their remissions stop and their MS symptoms continue to worsen. And about 15% of the people diagnosed with MS are diagnosed from the beginning with primary progressive MS. So identifying ways to optimally treat progressive MS is a priority.    Joining me with updates on progressive MS research, treatment, and rehabilitation are Dr. Kathy Zackowski and Dr. Daniel Ontaneda. Dr. Ontaneda is an associate professor of Neurology at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University and a staff member at the Cleveland Clinic Neurological Institute's Mellen Center for Multiple Sclerosis. And Dr. Zackowski is the Senior Director of Patient Management, Care and Rehabilitation Research at the National MS Society and a member of the International Progressive MS Alliance Scientific Steering Committee. We're sharing some startling details about MS care from the European MS Platform's MS Barometer 2020. We're talking about a study that shows that lifestyle choices like increasing physical activity and choosing not to smoke can have a positive impact on MS fatigue. And we'll tell you about a new program that empowers people affected by MS to pose the questions that will drive MS research. We have a lot to talk about! Are you ready for RealTalk MS??! Details from the European MS Platform's MS Barometer 2020  1:34 The International Progressive MS Alliance issues a call to action on progressive MS rehabilitation with Dr. Kathy Zackowski   4:35 Study shows that lifestyle changes can impact MS fatigue   18:00 Our Own Questions Have Power  19:20 Progressive MS treatment and Research with Dr. Daniel Ontaneda  21:03 Share this episode  38:17 Take the RealTalk MS Listener Survey and you could win a $100 Amazon Gift Card  38:38 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email:  https://realtalkms.com/187 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com RealTalk MS Listener Survey (You'll be entered to win a $100 Amazon Gift Card!) National MS Society COVID-19 Vaccine Guidance for People Living with MS MS Barometer 2020 Prioritizing Progressive MS Rehabilitation Research: A Call from the International Progressive MS Alliance STUDY: Associations Between Fatigue Impact and Lifestyle Factors in People with Multiple Sclerosis: The Danish MS  Hospitals Rehabilitation Study iConquer MS: Our Questions Have Power Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Give RealTalk MS a Rating and Review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 187 Guests: Dr. Kathy Zackowski and Dr. Daniel Ontaneda Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist,  RealTalkMS Privacy Policy

We're less than one week away from the National MS Society's Public Policy Conference. This year, the Public Policy Conference is virtual, which means that you have an opportunity to attend and learn how you can advocate for change on important policy issues affecting the MS community.       Joining me to talk about the Public Policy Conference and the issues that MS Activists will be discussing with our congressional representatives in the days following the conference is the Executive Vice-President of Advocacy and Healthcare Access for the National MS Society, Bari Talente. This is Episode #185 of RealTalk MS, which means our 200th episode will be here before you know it. We're inviting you to help us figure out how to celebrate that milestone! Developing breakthrough treatments for progressive MS? We'll share the info about a video replay of an International Progressive MS Alliance global webcast that you won't want to miss. We're also talking with a biopharmaceutical company that's conducting clinical trials to investigate a solid gold nanomedicine treatment for remyelination. And we'll tell you about a study that shows how an adaptive video game that you can play on your tablet provides a reliable measure of cognitive function for people living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! Episode 200 of RealTalk MS is coming...what should we do???  :22 Thank you, Dave Bexfield and ActiveMSers!  1:14 You can support the RealTalk MS RealWalkers WalkMS Team   3:41 The Progressive MS Alliance Webcast Replay  6:45 Nanotechnology to solve remyelination?  8:20 My interview with Clene Nanomedicine's Chief Medical Officer, Dr. Robert Glanzman  9:45 Can video game technology make MS cognitive assessment easier, faster, and more accessible?  23:44 My interview with the National MS Society's Executive Vice-President of Advocacy and Healthcare Access, Bari Talente  26:46 Share this episode  38:11 Take the RealTalk MS Listener Survey and you could win a $100 Amazon Gift Card  38:32 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email:  https://realtalkms.com/185 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com RealTalk MS Listener Survey (You'll be entered to win a $100 Amazon Gift Card!) National MS Society COVID-19 Vaccine Guidance for People Living with MS National MS Society: Timing MS Medications with COVID-19 mRNA Vaccines Register for the 2021 National MS Society Public Policy Conference ActiveMSers Webcast Video Replay: Accelerating Breakthrough Treatments in Progressive MS STUDY: Application of an Adaptive, Digital, Game-Based Approach for Cognitive Assessment in Multiple Sclerosis: Observational Study   Support the WalkMS RealTalk MS RealWalkers Team Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Give RealTalk MS a Rating and Review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 185 Guests: Dr. Robert Glanzman, Bari Talente Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, PPC2021, Nanotechnology, RealTalkMS Privacy Policy

When it comes to accessing care and even the disease course itself, MS is not an equal-opportunity disease. We're talking with Dr. Mitzi Joi Williams about the disparities that affect members of minority populations who are living with MS.     Dr. Williams is a Board-Certified Neurologist and Multiple Sclerosis Specialist who is passionate about educating and empowering people affected by MS to understand the disease process and the goals of treatment.  And Dr. Williams is an expert in understanding MS in underserved and minority populations. We're also inviting you to participate in the first-ever RealTalk MS Listener Survey (and be entered into a drawing for a $100 Amazon Gift Card!). We'll tell you about a call by the International Progressive MS Alliance to improve clinical trials. We'll share research announced at last week's ACTRIMS Forum that suggests there is an alarming amount of opioid use among people living with MS. We're also talking about a newly launched digital music therapy program that you can access from home. And we're sharing this month's CAN-DO MS programs that are all focused on building resilience. We have a lot to talk about! Are you ready for RealTalk MS??! Don't miss the ACTRIMS bonus episode! :22 Take our RealTalk MS Listener Survey and you could win a $100 Amazon Gift Card  1:17 International Progressive MS Alliance calls for changes in clinical trials   3:23 Opioid use among people living with MS  6:27 Digital music therapy for people living with MS  8:48 CAN-DO MS programs are focusing on resilience in March  10:23 My interview with Dr. Mitzi Joi Williams  12:02 Share this episode  29:50 Take the RealTalk MS Listener Survey  30:12 WalkMS 2021 is here!  30:37 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email:  https://realtalkms.com/183 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com RealTalk MS Listener Survey (You'll be entered to win a $100 Amazon Gift Card!) RealTalk MS ACTRIMS Forum Bonus Episode National MS Society COVID-19 Vaccine Guidance for People Living with MS National MS Society: Timing MS Medications with COVID-19 mRNA Vaccines Facing the Urgency of Therapies for Progressive MS -- A Progressive MS Alliance Proposal   STUDY: One in Five (20%) People with Multiple Sclerosis Use Prescription Opioids   MS in Harmony   CAN-DO MS program info & registration WalkMS 2021 Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Give RealTalk MS a Rating and Review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 183 Guests: Dr. Mitzi Joi Williams Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

The International Progressive MS Alliance is about to publish a paper that recommends advancing research on a specific biomarker to predict MS progression, and we're getting a pre-publication preview of what that paper is all about.   My guests are Dr. Robert Fox, a neurologist and Vice-Chair for Research at the Cleveland Clinic Neurological Institute, and Caroline Sincock, who lives with progressive MS. Both Doctor Fox and Caroline are members of the International Progressive MS Alliance Scientific Steering Committee and are among the authors of the new paper that we're going to preview.      We're also talking about the results of a study that show how increasing the energy in cells damaged by demyelination may stop MS progression.   We'll tell you why Mayzent failed to gain approval to treat active secondary progressive MS in England. We'll introduce you to the winner of the first Novartis Innovation Prize for Assistive Tech for Multiple Sclerosis. And we'll discuss study results that show that a protein in the blood called neurofilament light chain may predict MS progression.   We have a lot to talk about! Are you ready for RealTalk MS??! The 2020 ACTRIMS-ECTRIMS Virtual Conference  3:10 Boosting cellular energy at sites of myelin loss may stop MS progression  4:18 Why NICE failed to approve Mayzent to treat active secondary progressive MS    6:29 Novartis Innovation Prize awarded to AccessNow  9:04 Elevated neurofilament light chain may predict risk of MS progression  10:02 My Interview with Dr. Robert Fox and Caroline Sincock  11:27 Share this episode  42:11 Please Support the National MS Society COVID-19 Response Fund  42:30 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email:  https://realtalkms.com/149 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society's Ask An MS Expert Video Replay What You Need to Know About Coronavirus (COVID-19) National MS Society COVID-19 Response Fund International Progressive MS Alliance STUDY: Enhanced Axonal Response of Mitochondria to Demyelination Offers Neuroprotection: Implications for Multiple Sclerosis AccessNow STUDY: Plasma Neurofilament Light Levels are Associated with Risk of Disability in Multiple Sclerosis Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Give RealTalk MS a Rating and Review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 149 Hosted By: Jon Strum Guests: Dr. Robert Fox and Caroline Sincock Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

The guidance for using MS disease-modifying therapies during the COVID-19 pandemic has been updated. My guest is Dr. Aaron Miller, the Chair of the National MS Society’s National Medical Advisory Committee, the Medical Director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis, and a Professor of Neurology at the Icahn School of Medicine at Mount Sinai, and we're talking about the new guidance for each and every MS disease-modifying therapy that's currently available.     Last week, in the middle of the night, protections for people with pre-existing health conditions came under attack. We'll let you know what it all means and what's at stake for every person in the U.S. living with MS.   We're also talking about the results of a study that show more people than ever are exploring alternative medicine in managing their MS symptoms. And we'll tell you about a new online MS Treatment Adherence Resource Center.   In last week's International Progressive MS Alliance global webcast, 3 top MS experts shared very encouraging news about the development of new life-changing treatments for progressive MS. We'll let you know where to find the video replay of the webcast. And while you're checking online video replays, we'll let you know where you can find a replay of the Consortium of Multiple Sclerosis Centers' virtual Patient Education Program.   We have a lot to talk about! Are you ready for RealTalk MS??! In a late-night brief, the Trump administration asks the Supreme Court to invalidate Obamacare and eliminate protections for people with pre-existing health conditions  1:24 Catch the video replay of the International Progressive MS Alliance global webcast  6:04 Catch the video replay of the CMSC Patient Education Program    7:34 Survey says...Alternative medicine is widespread among people living with MS  8:19 MS Treatment Adherence Resource Center is launched  11:03 My Interview with Dr. Aaron Miller  13:06 Share this episode  23:26 Please Support the National MS Society COVID-19 Response Fund  23:45 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/148 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society's Ask An MS Expert Video Replay What You Need to Know About Coronavirus (COVID-19) National MS Society COVID-19 Response Fund Video Replay: International Progressive MS Alliance Webcast Video Replay: Consortium of MS Centers Patient Education Program STUDY: Cross-Sectional Survey of Complementary and Alternative Medicine Used in Oregon and Southwest Washington to Treat Multiple Sclerosis: A 17-Year Update MS Treatment Adherence Resource Center Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Give RealTalk MS a Rating and Review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 148 Hosted By: Jon Strum Guests: Dr. Aaron Miller Tags: MS, MultipleSclerosis, MSResearch, MSSociety, COVID19, RealTalkMS Privacy Policy

Over the past several weeks, the United States has been forced to re-visit, re-examine, and reconsider its own history of racial inequality. This difficult but necessary national conversation has been driven by instances of racial injustice that have their origins in much broader systemic or institutional racism. Our conversations on RealTalk MS typically focus on multiple sclerosis research and multiple sclerosis care. So how does the subject of racial inequality find its way onto today's episode?     My guest is Dr. Jackie Bhattarai, a clinical psychologist and Assistant Professor of Physical Medicine and Rehabilitation at Johns Hopkins School of Medicine. Dr. Bhattarai's research is focused on identifying and understanding the causes of racial disparities in multiple sclerosis care. I think you'll find our conversation thought-provoking, maybe surprising and, I hope, concerning.    We're also inviting you to this week's International Progressive MS Alliance global webcast when an international panel of MS experts will share the progress being made to speed the development of life-changing treatments for progressive MS. Our experts will also update us on the experiences of people living with MS who have contracted COVID-19, and how people with MS can minimize their risks during the pandemic.   We'll tell you about a new National Institutes of Health grant aimed at determining the reliability of a proposed biomarker for MS. And we'll share the sobering results of a new study about MS and depression.   We have a lot to talk about! Are you ready for RealTalk MS??! Don't miss the International Progressive MS Alliance Webcast  1:30 Cleveland Clinic receives NIH grant to study MS diagnostic biomarker  3:58 Depression is 2-3 times more likely in MS patients  6:23 My Interview with Dr. Jackie Bhattarai  9:21 Share this episode  26:35 Please Support the National MS Society COVID-19 Response Fund  26:54 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email:  https://realtalkms.com/147 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society's Ask An MS Expert Video Replay What You Need to Know About Coronavirus (COVID-19) National MS Society COVID-19 Response Fund International Progressive MS Alliance Webcast Registration STUDY: Incident Depression in Patients Diagnosed with Multiple Sclerosis: A Multi-Database Study Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Give RealTalk MS a Rating and Review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 147 Hosted By: Jon Strum Guests: Dr. Jackie Bhattarai Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

My guest this week is Dr. Amy Sullivan, a Clinical Health Psychologist and the Director of Behavioral Medicine at the Mellen Center for MS Treatment and Research at the Cleveland Clinic. We're talking about fighting feelings of isolation, building resiliency, caregiver emotional wellness, and how we should be thinking about living in a "new normal" world. Massachusetts General Hospital and iConquer MS surveyed more than 1,000 people living with MS about the impact of the COVID-19 pandemic on their daily lives. We're among the first to hear the survey results from investigator Dr. Farrah Mateen and Hollie Schmidt. MS research is about to take a quantum leap forward. We're talking about how the MULTI-ACT patient engagement roadmap will change the face of MS research and involve people affected by MS in ways that they've never been involved in research before. And we'll share new data from an ongoing clinical trial that's evaluating a cutting-edge cell therapy designed to eliminate B-cells carrying the Epstein-Barr virus. (Many experts believe that eliminating the Epstein-Barr virus Barr virus might eliminate most multiple sclerosis.) We have a lot to talk about! Are you ready for RealTalk MS??! The International Progressive MS Alliance is partnering with MULTI-ACT -- and why that's a major step forward in MS research  2:26 New Data About ATA 188 Cell Therapy Clinical Trial Shared at the European Academy of Neurology Virtual Meeting  5:47 Dr. Farrah Mateen & Holly Schmidt Share Results from the Massachusetts General Hospital/iConquer MS COVID-19 Survey  10:08 My Interview with Dr. Amy Sullivan  30:21 Share this episode  41:27 Please Support the National MS Society COVID-19 Response Fund  41:50 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/144 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society's Ask An MS Expert Video Replay What You Need to Know About Coronavirus (COVID-19) National MS Society COVID-19 Response Fund International Progressive MS Alliance Announces Partnership with MULTI-ACT As Part of World MS Day Celebrations MULTI-ACT   Phase 1 Study to Evaluate the Safety and Efficacy of ATA188 in Subjects with Progressive Multiple Sclerosis Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Give RealTalk MS a Rating & Review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 144 Hosted By: Jon Strum Guests: Dr. Amy Sullivan, Dr. Farrah Mateen, Hollie Schmidt Tags: MS, MultipleSclerosis, MSResearch, MSSociety, Coronavirus, COVID19, iConquerMS, RealTalkMS Privacy Policy

In just two weeks, the National MS Society is hosting its annual Public Policy Conference in Washington, D.C. The centerpiece of that conference is our Day On The Hill when 300 MS Activists meet with our Congressional Representatives and Senators to discuss the legislative issues that are most important to people affected by MS. My guest is Bari Talente, the Executive Vice President of Advocacy for the National MS Society and we're talking all about this year's Public Policy Conference and the value and importance of advocacy.     We'll also let you know how and where to sign up for Discovering Life-Changing Treatments for Progressive MS, the global webcast from the International Progressive MS Alliance. (You have to hurry! It's happening in 2 days!)    You'll hear about an encouraging study of the effectiveness of stem cell therapy for some people living with secondary progressive MS.  We're also talking about why you might want to support Jon in this year's Walk MS. And you'll learn about a non-invasive breakthrough technology that provides a detailed assessment of the status of MS progression and the effectiveness of disease-modifying therapy...in 10 seconds.   We have a lot to talk about! Are you ready for RealTalk MS??! ___________   Sharing Some Crazy Statistics   :44 We're Just 2 Weeks Away From the Public Policy Conference  2:27 Register for the Global Webcast: Discovering Life-Changing Treatments for Progressive MS   3:39 You Can Support Jon in WALK MS  4:54 HSCT Shows Benefits in Some People with Secondary Progressive MS  6:23 New Eye-Tracking Tech Uses AI to Monitor MS  9:09 My Interview with Bari Talente  11:54 Share This Episode  26:03 Reminder...Please Donate to Walk MS  26:28 Download the RealTalk MS App  27:03 ___________ SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/129 ___________ ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 ___________ LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Jon's WALK MS Fundraising Page Register for the International Progressive MS Alliance Global Webcast: Discovering Life-Changing Treatments for Progressive MS Low-Intensity Lympho-Ablative Regimen Followed by Autologous Hematopoietic Stem Cell Transplantation in Severe Forms of Multiple Sclerosis: A MRI-Based Clinical Study BEAT-MS Clinical Trial C. Light Technologies Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Give RealTalk MS a Rating & Review ___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 129 Hosted By: Jon Strum Guests: Bari Talente Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, RealTalkMS Privacy Policy

We're exploring the healing power of adventure. My guest is Brad Ludden, the founder of First Descents, a non-profit organization that, since 2001, has taken over 10,000 young adult oncology patients on more than 1,000 outdoor adventures that feature activities like rock-climbing, kayaking, and surfing. Last year, First Descents expanded their programming to include outdoor adventures designed for young adults living with MS. And every one of these adventures is offered at no cost to the participants.   We're also talking about the International Progressive MS Alliance's upcoming Facebook Live event, Symptom Management & Well-Being in Progressive MS: Advancing Research and Treatment. It takes place next week, and we'll tell you how you can register to be a part of it.  We're talking about a research team at the Mayo Clinic that discovered a molecule that serves as a "switch" for myelin repair. You'll hear about a study that's going to compare the effectiveness of stem cell treatment with high-efficacy disease-modifying therapies for treating relapsing MS. And we'll tell you how you can register as a potential participant.   We have a lot to talk about! Are you ready for RealTalk MS??! ___________   Greetings from the Pathways to Cures Think Tank  :22 My Shout-Out to the MS Society Southern California-Nevada Chapter's Emerging Leadership Board  1:14 Register for the International Progressive MS Alliance's FACEBOOK LIVE Event  3:14 California Is Launching Its Own Generic Prescription Drug Label  4:49 EMD Serono's MS-LINK & MyHealthTeams Launch a Family Planning Resource Center  7:48 BEAT-MS Study Will Compare Stem Cell Treatment with High-Efficacy Disease-Modifying Therapies  9:08 Mayo Clinic Team Discovers a Molecular Switch for Repairing Myelin  11:14 My Interview with Brad Ludden  12:50 Share This Episode  27:24 Download the RealTalk MS App  27:50 ___________ SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email:  http://realtalkms.com/123 ___________ ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 ___________ LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com First Descents Register for the Symptom Management & Well-Being in Progressive MS: Advancing Research and Treatment Facebook Live Event EMD Serono & MyHealth Teams Family Planning Resource Center BEAT-MS Clinical Trial Blocking the Thrombin Receptor Promotes Repair of Demyelinated Lesions in the Adult Brain Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Give RealTalk MS a Rating & Review ___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 124 Hosted By: Jon Strum Guests: Brad Ludden Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, FirstDescents, MyMSTeam, MayoClinic, RealTalkMS Privacy Policy

November is National Family Caregiver Month, and while I was at the 4th Annual National Caregiving Conference in Chicago, I met this week's guest, Caregiver Strategist Penny Patnaude. Penny and I talked about some of the things that caregivers want to be thinking about in planning their own strategy for providing great care to their loved one without losing themselves in the process.    I'll also introduce you to Dr. Lindsey Knowles, a young MS rehabilitation researcher who will give us an insider's look at what the Tykeson Fellows Conference is all about, and why it's so important for the future of MS research.   We're also talking about the cannabis-based treatment for MS spasticity that was approved in the U.K. You'll hear about last week's International Progressive MS Alliance meeting in Amsterdam, and we'll tell you about an investigational therapy that can reset the immune system in the mouse model of MS in a single dose.   We'll remind you that if you're a young adult, between 18 and 45 years old, First Descents is offering you a week-long ski trip to Crested Butte, Colorado. And it's FREE! (Don't worry, we'll tell you how and where to begin the application process!)   You'll hear about the research team in Montreal that may have found a way to stop MS progression.   And we'll tell you how easy it is to share this episode of RealTalk MS with family and friends!   We have a lot to talk about! Are you ready for RealTalk MS??! ___________   Thanks for all the kind words!   :22 The National MS Society & RealTalk MS Partnership  :52 Join the Conversation! Get In Touch with RealTalk MS    2:21 The Progressive MS Alliance Meeting in Amsterdam   3:32 The Tykeson Fellows Conference & My Conversation with Dr. Lindsey Knowles  5:26 Sativex Approved in U.K. for MS Spasticity  11:12 Single Dose of Investigational Therapy Resets the Immune System in Mouse-Model of MS  13:19 First Descents Offers a FREE Ski Trip to Crested Butte to Young Adults Living with MS  15:39 Canadian Research Team Says They May Be Able to Stop MS Progression  17:51 My Interview with Caregiver Strategist Penny Patnaude  19:51 Share This Episode  27:11 How to Subscribe to RealTalk MS, Download the RealTalk MS App, or Listen with Alexa  27:36 ___________ SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email:   https://realtalkms.com/117 ___________ ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 ___________ LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Give RealTalk MS a Rating & Review  The National MS Society & RealTalk MS Announce a Partnership The International Progressive MS Alliance Administration of a CD45 Antibody Drug Conjugate as a Novel, Targeted Approach to Achieve Immune System Reset: A Single Dose of CD45-targeted ADC Safely Conditions for Autologous Transplant and Ameliorates Disease in Multiple Models of Immune Disease First Descents Skiing at Crested Butte Activated Leukocyte Cell Adhesion Molecule Regulates B Lymphocyte Migration Across Central Nervous System Barriers The Caregiver Strategist Give RealTalk MS a Rating & Review  Download the RealTalk MS App for iOS Download the RealTalk MS App for Android ___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 117 Hosted By: Jon Strum Guests: Penny Patnaude Tags: MS, MultipleSclerosis, MSResearch, MSSociety, Caregiving, Sativex, Stemcells, FirstDescents, RealTalkMS Privacy Policy

The International Progressive MS Alliance is an unprecedented and unparalleled global effort to understand and treat progressive MS.   Last week, I was in Copenhagen, Denmark, for an important meeting of the Progressive MS Alliance Scientific Steering Committee. And in today's episode, I'll update you on the status of three potentially breakthrough progressive MS international research projects.   Don't forget! World MS Day is Thursday, May 30, and we're talking with MS International Federation CEO, Peer Baneke, about why World MS Day is important, and how you can participate!   And this is your final reminder! You only have until May 31 to submit your entry to be my special guest on RealTalk MS Episode #100!  We have a lot to talk about. Are you ready for RealTalk MS??! You Can Be My Guest on RealTalk MS Episode 100  :59 Research Update from the International Progressive MS Alliance Scientific Steering Committee Meeting in Copenhagen, Denark  2:37   My World MS Day interview with MS International Federation CEO, Peer Baneke  15:07 ___________ ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 ___________ LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Be My Guest on RealTalk MS Episode #100 International Progressive MS Alliance Multiple Sclerosis International Federation World MS Day Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Give RealTalk MS a Rating & Review  ___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 91 Hosted By: Jon Strum Guest: Peer Baneke Tags: MS, MultipleSclerosis, MSResearch, ProgressiveMS, MyInvisibleMS, MSIntFederation, RealTalkMS

I've invited a very special guest to talk about the subject that I've received -- by far -- the most requests to discuss on the podcast, and that's sexual function and MS.   We're also talking about the International Progressive MS Alliance's future strategies, World MS Day, and we're giving away an Amazon Echo Dot!   We have a lot to talk about! Are you ready for RealTalk MS? ____________ MS Conference Update  :51 International Progressive MS Alliance Announces Future Strategies  4:06 World MS Day  6:10 Win an Amazon Echo Dot  7:56 Interview with Stuart Nixon, MBE  11:06 ___________ LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com The International Progressive MS Alliance World MS Day The RealTalk MS Podcast Alexa Skill Enter to Win an Amazon Echo Dot ___________ Entering our Amazon Echo Dot Contest is Easy! 1. Visit www.realtalkms.com/contest 2. Click on the "View in iTunes" button on the left 3. If prompted to launch iTunes, click the "Launch Application" button 4. Click the "Subscribe" button 5. Click on "Ratings and Reviews" 6. Click the "Write a Review" button 7. Write a simple, honest review about the RealTalk MS podcast 8. Give us a rating from 1 to 5 stars (with 5 stars being the best) 9. Click "SUBMIT" 10. Send an email to contest@realtalkms.com. Include your email address and whatever name you left your review under THAT'S IT! Winner will be announced on the June 26th podcast. ___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 37 Guest: Stuart Nixon, MBE Hosted By: Jon Strum Tags: MS, MultipleSclerosis, bringinguscloser, Alexa, AllianceCongress2018, RealTalkMS

The RealTalk MS podcast is coming to you from the Sheraton Centre Hotel in Toronto, Canada, where the International Progressive MS Alliance is holding its 3rd Scientific Congress. The theme of the event is Making a Difference Through Rehabilitation & Symptom Management. Yesterday's session included a presentation on how some of the insights from stroke rehabilitation can be transferred to MS rehabilitation. There were detailed presentations on some of the key areas impacting translational strategies in progressive MS, conversations about  comorbidities, cognition, exercise, and functional recovery. There were experts talking about managing fatigue, creating a greater sense of resilience, and a novel strategy for bladder management. In this episode, we're talking to Dr. Karen Lee, Director of Research for the MS Society of Canada, Bernadette Porter, a Consultant Nurse at the National Hospital for Neurology and Neurosurgery in the U.K. with an innovative approach to bladder management designed to tame UTI's, and Levie Hofstee, a tech entrepreneur who has developed a new app that will automatically - and virtually invisibly - track your MS fatigue. We have a lot to talk about! And we're talking about it live from the International Progressive MS Alliance Scientific Congress in Toronto, Canada. So...are you ready for RealTalk MS?    

Today -- and every day this week -- the RealTalk MS podcast is coming to you from the Sheraton Centre Hotel in Toronto, Canada, where the International Progressive MS Alliance is holding its 3rd Scientific Congress. The theme of the event is Making a Difference Through Rehabilitation & Symptom Management.   The first day of the Scientific Congress featured amazing presentations, insightful panel discussions, world-renowned MS researchers, and even a couple of robots! Topics included how brain rehabilitation techniques for people who have suffered a stroke might be translated into rehabilitation techniques for people living with progressive MS, some amazing insights that were gained through external brain stimulation for managing depression, PTSD, and other mental health issues, and how socially assistive robots can aid people living with progressive MS by picking up some of the caregiver burden.   The day featured a presentation and panel discussion all about understanding the perspectives of people living with progressive MS, there was a deep dive into how to best use exercise therapy for people living with progressive MS, and a presentation on cognitive rehabilitation.   And in this episode, we'll talk to Dr. Lisa Melton, the Head of Research for MS Research Australia, robotics engineer Shane Saunderson, and two MS researchers will walk us through their research studies.   We have a lot to talk about! And we're talking about it live from the International Progressive MS Alliance Scientific Congress in Toronto, Canada. So...are you ready for RealTalk MS?

Today -- and every day this week -- the RealTalk MS podcast is coming to you from the Sheraton Centre Hotel in Toronto, Canada, where the International Progressive MS Alliance is holding its 3rd Scientific Congress. The theme of the event is Making a Difference Through Rehabilitation & Symptom Management.   In today's podcast, you'll hear from a renowned progressive MS researcher who is leading an international team of experts in a 3-year research study. You'll also hear from a trio of rehabilitation experts as they discuss some of the challenges they currently face in MS rehabilitation. And we're breaking down the sessions and presentations that will be taking place throughout the day.   We have a lot to talk about! And we're talking about it live from the International Progressive MS Alliance Scientific Congress in Toronto, Canada. So...are you ready for RealTalk MS?

Today -- and every day this week -- the RealTalk MS podcast is coming to you live from the Sheraton Centre Toronto Hotel in Toronto, Canada, where, tomorrow, the International Progressive MS Alliance kicks off its 3rd Scientific Congress. The theme of the event is Progressive MS -- Making a Difference Through Rehabilitation & Symptom Management, and on today's podcast episode, we're previewing some of what the attendees will be seeing and hearing.      We're also talking about several MS rehabilitation research studies that examine mindfulness meditation and well-being, virtual reality as an effective tool for gait & balance rehabilitation, and how a history of depression might stop people with MS from doing physical exercise. We'll also tell you how you can use social media to share your ideas about next-generation mobility devices.   We have a lot to talk about. And we're talking about it live from the International Progressive MS Alliance Scientific Congress on MS Rehabilitation & Symptom Management, at the Sheraton Centre Hotel in Toronto, Canada.   ____________ FDA Files Suit Against 2 Stem Cell Clinics  1:03 Mindfulness Meditation Creates Short-Term Well Being for People Living with MS  3:32 Virtual Reality as Effective as Traditional Rehabilitation for Gait & Balance in MS  5:03 Depression as a Barrier to Physical Exercise for People Living with MS  6:55 #MyMobilityUnlimited Is the Hashtag that Lets You Help Design the Future of Mobility Devices  9:34 International Progressive MS Alliance Scientific Congress: Progressive MS -- Making a Difference Through Rehabilitation & Symptom Management  11:24 ___________ LINKSIf your podcast app doesn’t show these links, you’ll find them in the show notes at www.RealTalkMS.com Mindfulness Meditation Improves Short-Term Well Being in MS Virtual Reality Effective in Treating Gait & Balance Impairment in MS Lower Aerobic Endurance Linked to History of Depression in MS #MyMobilityUnlimited Seeks Ideas From Wheelchair Users The International Progressive MS Alliance The RealTalk MS Podcast Alexa Skill Give RealTalk MS a Rating & Review ___________ Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 33 Hosted By: Jon Strum Tags: MS, MultipleSclerosis, Mindfulness, Depression, MyMobilityUnlimited, MSRehabilitation,  Rehabilitation, AllianceCongress2018, RealTalkMS

The International Progressive MS Alliance is an unprecedented global alliance of MS organizations, researchers, clinicians, pharmaceutical companies, and people living with progressive MS, transforming the landscape of multiple sclerosis. This week, we're talking about the work and the progress of the Alliance with Professor Alan Thompson, Dean of Faculty of Brain Sciences at University College London, and Chair of the Alliance's Scientific Steering Committee.    We're also talking about a study published by Johns Hopkins School of Medicine that demonstrates how pursuing a healthy lifestyle can further limit disability and depression in MS. And we're discussing how a simple blood test may soon replace MRI scans to measure MS disease progression. We'll also tell you about a $4 million dollar innovation challenge to create next-generation smart mobility devices. We've got the news, views, interviews & breakthroughs that are important to you. So...are you ready for RealTalk MS?

This week, we're talking about MS Activism with the former mayor of Sacramento, California and current MS Activist, Heather Fargo. In last week's podcast, we talked about the prescription drug price transparency bill that was recently signed into law in California. Heather played an important role in the passage of that law, and we'll be talking to her about why that law is so important to the MS community. We're also going to talk about why it's important to use your power as an MS Activist, and how you can become an MS Activist, if you aren't one already. The ECTRIMS-ACTRIMS joint conference starts tomorrow in Paris. It's the largest annual international MS research conference in the world, and the National MS Society and the International Progressive MS Alliance are hosting a webcast that you won't want to miss. We'll give you all the details and let you know how you can register for the webcast. We're also talking about a newly announced national MS Registry that you and your neurologist can participate in. And we'll look at a new Lemtrada study that produced some really encouraging results. We've got the news, views, interviews & breakthroughs that are important to you. So...are you ready for RealTalk MS?

This week's episode focuses on some of the cutting edge research being done in the Progressive MS arena. Jon's guest, Dr. Tim Coetzee, Chief Advocacy, Services & Research Officer at the National Multiple Sclerosis Society, takes us through the work of the International Progressive MS Alliance. Jon and Tim also talk about Ocrevus -- the very first drug to receive FDA approval for the treatment of Progressive MS, and what that means for future Progressive MS drug therapy. We'll also be talking about a new research study at Duke University that will be taking full advantage of your iPhone to capture your individualized data, and we'll be letting you know how you can register for that study. And last week, the FDA approved a higher dosage generic version of Copaxone. Generic Copaxone isn't really new...but the higher dosage is, and we'll be talking about why that might be good news for the thousands of people currently using Copaxone. We've got news, views, interviews & breakthroughs in the MS world. Are you ready for RealTalk MS?

[intro music]   Host – Dan Keller Hello, and welcome to Episode Fourteen of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m your host, Dan Keller.   This week’s podcast features part two of an interview with Professor Gavin Giovannoni about the role of Epstein-Barr virus in MS. But to begin, here is a brief summary of some of the latest developments on the MS Discovery Forum at msdiscovery.org.   We've published a blog post from Christine Granfield, the founder of HealthCare Journey. Healthcarejourney.org is a website designed to help MS patients easily navigate the expanse of information about MS. In the blog post, Ms. Granfield says that HealthCare Journey is not meant to replace the doctor-patient relationship but instead provide a place where patients can find answers to questions with accurate, up-to-date information when their physician might not be available.   We published another blog post written by our intern, Cynthia McKelvey, on how to interact with the news media. News about science is often sensationalized and over simplified. But that’s all the more reason for researchers and clinicians to be media-friendly. In her post, Cynthia offers 13 tips on how to talk to reporters so you can be sure the best and most accurate information gets to the public.   Last week we interviewed Dr. Alan Thompson of the International Progressive MS Alliance about the difficulties of researching progressive MS. We published more information on the Alliance, its goals, and a full list of the 22 recipients for their first round of funding, totaling 22 million euros. To view the article, visit msdiscovery.org and visit our News Briefs section under the News and Future Directions tab.   [transition music]   Now to the interview. Professor Gavin Giovannoni from Queen Mary University in London is one of the worlds most prolific and most visible MS researchers and clinicians. He's also on the scientific advisory board for MSDF. Two weeks ago we featured the first part of my interview with him about the potential for a cure in MS. This week we’re going to discuss the roll of EBV in MS.   Interviewer – Dan Keller Professor Giovannoni, where does it come in? How has it entered the thinking?   Interviewee – Gavin Giovannoni We have a causal theory. We don't just switch on a light switch, and we've got a call that said it evolves over time. And if there's one particular thing that looks like it's got the top candidate for being a cause of MS is Epstein-Barr virus. And I think the original observation is epidemiological. People with infectious mononucleosis, which is delayed EBV infection that is symptomatic, have a higher risk of developing MS, and that's been reproduced now across many, many studies as a risk factor. But EBV infection in itself is a risk factor because if you're not infected with the virus, in other words people who don't have the virus, have a very, very low risk…it's almost a zero risk of getting the disease. So in terms of its negative predictive value – that's the strongest value we have – people don't get MS if they don't have EBV. So it looks like it’s an essential component of the causal pathway. How it's acting in the causal pathway? We don't have any idea. We just do know that if you do get EBV infection or infectious mono it's a risk factor throughout life. So in the Danish study, it shows the risk remains even when you go into your 40s, 50s, and 60s, which is interesting.   And EBV is a complex biology. We don't know where it's acting. We know it resides as a latent infection in the B cell. And what it's doing to B-cell biology is incredibly complicated. It hijacks B-cell biology, and it affects its antigen-presenting function, it affects its survival, etc. So people are targeting the B cell; I think the B cell is important. And the reason why I think the B cell is important when you look at all the most effective therapies in MS, when you put them on a chart with all the cells they affect, the only common cell to all of them is the B cell. And the link that the B cell may be the Epstein-Barr virus. And how EBV triggers autoimmunity haven't a clue. We originally thought well maybe the link between infectious mono and MS was related to HLA susceptibility. But we did a study on university students in the UK, and we showed that the HLA type that predisposes you to infectious mono is not the HLA type that predisposes you to MS. So we don't think it's at the HLA level that EBV is interacting with MS susceptibility; it's somewhere else.   The other risk factors are smoking. And when you start putting smoking and EBV and low vitamin D, which is the other environmental factor, together it looks like there's some interaction of all three components. But how they're working at a biological level that's where research needs to be done. So some people are … I think there's mimicry between EBV and myelin proteins, and there is some data that there are some antigenic epitopes in the EBV proteins and [?] antigens, which is why a lot of people are focused on CD4 cells as being the link. I'm not sure if it is the CD4. Others are focused on the CD8 cells as being the link. Michael Pender in Brisbane, Australia, thinks that Epstein-Barr virus is acting as the innate stimulus, the danger signal, that just upregulates innate immunity that then allows autoimmune responses to occur on top of that. And he thinks that's occurring in the central nervous system. That's his theory. And he thinks that people with multiple sclerosis have a deficiency of cytotoxic CD8 cells that keep the EBV virus in check. So he's now testing the strategy of trying to boost the CD8 response against EBV and kill the Epstein-Barr virus to lower the innate activation and reduce autoimmunity. That's his theory.   I wish I could tell him my theory. All I know is that the epidemiological observations are pretty standing. And you know, we probably should be doing a vaccine trial to test the hypothesis. There is a vaccine for EBV, but it's been discontinued. So GSK developed the vaccine. It wasn't that effective in stopping EBV infection, but it was very effective in preventing infectious mono. So what it did was it raised your immunity to a level that stopped you getting infectious mono, and that may be enough for MS prevention. You know, when they sold the EBV vaccine program to MedImmune, and I heard about six months ago that maybe they had stopped the program. There is no EBV vaccine program occurring in the pharmaceutical arena. There's been a recent meeting in Oxford around Epstein's anniversary because it's 50 years since he discovered the virus. And the, Harold Varmus was there, and there's a big push now for the NIH to fund a vaccine study – interesting not to prevent MS but to prevent the secondary malignancies linked to EBV. Because EBV is linked to a whole lot of hematological malignancies. So the idea there would be if you could prevent people getting Epstein-Barr you prevent a whole lot of lymphomas particularly. I'm personally a little worried about that strategy because EBV is one of our most co-evolved viruses. At a population level, it's part of our immune systems. So I actually think at a population level EBV must be doing something good for society and the population. I think it may be a link to B-cell memory or something like that.   So if we stop people getting EBV, we may be storing our problems at a population level. But until we do the trials we won't know. So we need a vaccine, and that's the way to test is EBV causal? Coming away from it, it may just be the trigger, or it may be driving the disease continuous. If that's the case, then we need to have anti-EBV drugs. And there is one being tried right now; it's called ocrelizumab. It's an anti-CD20 drug. Itself hasn't been tested as an anti-EBV drug, its predecessor, which is rituximab, is licensed as an anti-EBV. It's actually the only drug that's licensed to treat EBV. It's licensed to treat EBV associated lymphoproliferative disease, which occurs in transplant patients. It's pretty effective at switching off on that condition, and the EBV levels just plummet. A company that's developing ocrelizumab, which is Genentech Roche, wouldn’t like for me to say that it's an anti-EBV drug, but that's exactly how it may be working in MS; it may be targeting EBV. The obvious thing is to test antivirals that target EBV. There are no specific ones that have been designed for EBV, but we've got a particular drug that we would love to test against EBV because it has some activity. Trying to get the funders convinced that we should do a trial of an anti-EBV drug in MS has been difficult. I think we shouldn't ignore the EBV hypothesis, though, because the data out there is pretty compelling that it's causal. And as a community, I think we have a responsibility to test whether or not it is causal. And the only way we can do that is intervention studies – vaccines and targeting the virus with antibiotics.   MSDF It seems the geographic distribution of MS may actually be opposite say the distribution of Burkitt’s lymphoma. And what is EBV doing and how does it do it in different regions? And I wonder if that brings in the vitamin D hypothesis again.   Dr. Giovannoni MS prevalence pretty much matches infectious mono prevalence. So infectious mono has also got a gradient. The Burkitt's lymphoma thing probably that follows patterns of parasitic infection, particularly in malaria. So I think EBV probably interacts with other infectious agents, and that's one of the theories about EBV; it's not working on its own; it's working as a coinfection with another virus. The other virus that we need to talk about are the family of the HERVs, human endogenous retroviruses. Because the EBV is a potent transactivator of these viruses. In the big body of literature on HERVs being involved in MS, a lot of us think it's associative. In other words, inflammatory response triggers transactivation of HERVs in what we see as an epiphenomenon. But there are people who think it may be linked to the cause of the disease. Again the only way we can test this hypothesis is by treating people with drugs that target EBV and HERVs. Because HERVs are drugable; they are retroviruses, and you've got a whole arsenal of therapy that could target the various components of HERV biology. We should be doing trials in that as well.   Coming back to the vitamin D, there has been one small study that needs to be reproduced showing that if you do get EBV infection when your vitamin D levels are low your antibody responses are much more marked. And so there may be some link between low vitamin D and infection, but nobody has actually studied that formally, and I think it's something we tried to do with our epidemiological tools to see vitamin D deficiency or low levels makes it more likely that you're going to get infectious mono, that maybe they are interacting with each other. I don't think it's going to be as simple as that, though, to be honest with you. I think they're probably going to be working in an immunological level. I'm not sure if they're going to be causal; I think they may be associated with each other. EBV triggers a mess of lymphoid proliferation, which consumes vitamin D levels. So if you find someone with infectious mono and they have low D levels, it could be the infectious mono is reverse causation rather than the other way of causation. So we need to do that prospectively, and it's a difficult study to do.   But I think also the other thing you've got to look at is when they're starting to put all of these risk factors together in studies, and this has been mainly been done in the Scandinavian databases – and you start putting the HLA-DR15 in, the protective HLA-A2 in, the history of infectious mono, serum levels of anti-EBV antibodies, put smoking in, start putting vitamin D levels in – you're beginning to see relative up about 40. So that's a big signal to me because the doyen of causation theory, Bradford Hill, said that when you start getting relative risks above 40 that you should be thinking causation. So I'm beginning to see a causal pathway where all of these factors now are giving relative risks that are very high compared to the background population. And so, those factors must all be in the causal pathway. And the question is which one can you intervene in? And there's a few you can intervene in. But EBV is the obvious one. If you take it out of the causal pathway, you may be able to prevent this disease.   So I'm lobbying – and whole lot of us are lobbying – that we really need to get the public health community and the MS community and the virology community together so we can start thinking about prevention trials. Around about 5 to 10% of the adult population are EBV negative. But that group of people don't get MS. So that's the important factor is those people don’t get MS.   MSDF But the flip side is 90% of the population has been exposed to EBV, and most of those people don't get MS. So do you think it's all of these other cofactors you've mentioned? Whereas EBV sort of lights the fire if the fuel is there?   Dr. Giovannoni Yes, I think that's true. And Bradford Hill, I mean he developed his theory for causation around common manifestations or re-exposures. Like asbestosis is one of the examples he always used that if you had asbestosis, which is quite of a rare exposure, the chances of getting mesothelioma, which is a rare cancer, was almost 200 times background. So that's easy to understand. But EBV is such a common exposure, and MS is a relatively rare manifestation. So in that situation, the relative risks come down. So even though the relative risk of getting MS is only about 2.2 to 2.5 with infectious mono, it doesn't mean to say it's not causal. It could still be causal. So I'm not worried that the relative risks are low. But I agree with if it's EBV infection on top of something else the genetic susceptibility, the low vitamin D, or all those other factors that then triggers the autoimmune response.   But if EBV is a pivotal factor and you stop it, those other factors are irrelevant. That's why we need to do prevention studies. We need the vaccine, though. The original vaccine strategy was developed to prevent EBV completely; that's in terms of oncoprevention. But in terms of MS and autoimmunity, you may not have to prevent Epstein-Barr virus. Maybe what you need is to make sure you're vitamin D replete and get wild-type infection when you're very young. That may be sufficient to lower the risk of MS. You may not necessarily need a lifelong protective immunity against Epstein-Barr, but maybe you just need to be infected at a young age when your immune system can deal with it. It doesn't fertilize the field for autoimmunity later on in life; that may be the strategy.   MSDF Does it get into the possibility of tolerance?   Dr. Giovannoni Yes.   MSDF To EBV?   Dr. Giovannoni If we knew about the biology of EBV, I mean I'm not a virologist. And when I delve into the complex biology of Epstein-Barr virus, how it's fooling the B cell into surviving longer and bypasses B-cell signaling pathways, it's a credibly cleaver virus. And there's a lot of biology there that needs to be picked apart in the MS field. So there may be pathways in the EBV biological pathway that could be targeted rather than just targeting the virus itself. So I think there's lots of research to be done. This is why we, as an MS community, really need to bring virologists into the community as much as possible. And at the moment, that doesn't seem to be happening a lot. There's very few virologists interested in MS. You can count them on one hand to be honest with you that are really interested in MS. Most virologists are working on other diseases. And when you go to them, it's hard to get them interested in MS because MS is something on the periphery of their thought. They're usually targeting obviously infectious diseases. But most of the EBV virologists are working in oncology, lymphomas.   MSDF Very good. Thank you.   [transition music]   MSDF Thank you for listening to Episode Fourteen of Multiple Sclerosis Discovery. This podcast was produced by the MS Discovery Forum, MSDF, the premier source of independent news and information on MS research. MSDF’s executive editor is Robert Finn. Msdiscovery.org is part of the non-profit Accelerated Cure Project for Multiple Sclerosis. Robert McBurney is our President and CEO, and Hollie Schmidt is vice president of scientific operations.   Msdiscovery.org aims to focus attention on what is known and not yet known about the causes of MS and related conditions, their pathological mechanisms, and potential ways to intervene. By communicating this information in a way that builds bridges among different disciplines, we hope to open new routes toward significant clinical advances.   We’re interested in your opinions. Please join the discussion on one of our online forums or send comments, criticisms, and suggestions to editor@msdiscovery.org.   [outro music]          

[intro music]   Hello, and welcome to Episode Thirteen of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m your host, Dan Keller.   This week’s podcast features an interview with Dr. Alan Thompson about the International Progressive MS Alliance, a new collaborative effort to unravel the mysteries of progressive MS. But to begin, here is a brief summary of our time at the ECTRIMS-ACTRIMS meeting in Boston.   The M-S-D-F editorial staff was in full force at MS Boston 2014. We were everywhere covering talks and poster sessions, tweeting up a storm. We live-tweeted the Plenary sessions and most of the talks. If you missed the, or just want to relive the highlights, you can see a roundup of all the best tweets from MS Boston 2014 at our blog on msdiscovery dot o-r-g.   At the meeting we recorded several interviews for future Multiple Sclerosis Discovery podcasts. We’re excited to bring you interviews with researchers, [Dan, name three people you interviewed], and more over the coming weeks and months.   Our parent organization, the Accelerated Cure Project for Multiple Sclerosis –ACP--, also had a booth at the meeting. We really enjoyed meeting many of M-S-D-F’s readers and listeners and telling them more about our organization and our projects. In addition to MSDF, ACP manages a repository of almost 3,000 biological samples from people with Multiple Sclerosis (MS) and other demyelinating diseases, their affected and unaffected relatives, and unaffected, unrelated matched controls. We provide the samples to researchers quickly and at minimal cost. ACP has received funding for a patient-powered research network for multiple sclerosis. We will soon debut the network’s web portal, called iConquerMS. We were especially delighted to announce initial funding from EMD Serono for OPT-UP – which stands for optimizing treatment, understanding progression -- a longitudinal study of 2,000 people with MS. If you missed us, visit accelearatedcure dot o-r-g for more information.   [transition music] Now to the interview. Dr. Alan Thompson is the chair of the scientific steering committee of the International Progressive MS Alliance. At the ECTRIMS-ACTRIMS meeting, the Alliance announced their 22 first-round grant recipients. Dr. Thompson met with science writer Cynthia McKelvey to discuss the challenges in researching progressive MS. Interviewer – Cynthia McKelvey What is the goal of the Progressive MS Alliance?   Interviewee – Dr. Alan Thompson The goal is very simple; it’s to find treatments for progressive MS, probably the most important thing we have to do in the field of MS now.   MSDF We’re at the ACTRIMS and ECTRIMS meeting in Boston, and tomorrow you’re going to announce the first round of grant recipients. What were you trying to accomplish with this first round?   Dr. Thompson Well this, the RFA one as we call it, was really to stimulate interest in progressive MS; so to encourage as many people around the world to put in applications for these relatively small awards – they’re 75,000 Euros – but it was really to stimulate interest. And it certainly succeeded in doing that in that we had 195 applicants, perhaps double of what we thought. And I think what’s also quite unique about this is this is an international initiative, so the review of these awards was done internationally and agreed by this panel, so that they’ll be announced tomorrow. We were initially hoping we would have 15 awards, but we’ve been able to make 22 awards because of A, the quality of the applications, but also the willingness of the executive committee to actually go a little bit further.   MSDF With this first round in terms of the research, what do you hope to accomplish to eliminate some of the mysteries in progressive MS?   Dr. Thompson We’ve identified a number of areas that we feel are absolutely critical if we’re going to actually identify new treatments. The first is around mechanisms underlying progression and thereby identifying potential targets for treatment. Then, of course, there’s the whole issue of biomarkers and evaluating the effect of treatments, setting up new trials in progressive MS. And the other area is around rehabilitation and symptomatic management, which is really critical for people with progressive MS.   And if you look at the range of awards that we’re making, they actually hit all of these areas. So there’s a couple of awards in each one, which is really very reassuring. I mean, I think the hope will be that these could also be the beginning of the major network awards that we’re moving on to in the next phase.   MSDF And my understanding is that in progressive MS, there’s a lot of issues just in doing basic research, and even in moving onto clinical trials. What are some of those issues and how do you propose that research can overcome them?   Dr. Thompson Well, if we look at two areas, I suppose, the first is understanding the basic mechanisms, and what does progression mean, what’s actually happening? Is it driven by inflammation, is it purely neurodegenerative, what’s the combination of those, are there other cells involved like microglia or astrocytes? So there are big questions around mechanisms, which are essential if you’re going to target treatments. And driving that research forward will help us to define new targets. That’s part of the story.   The other large area is then, well, how do you measure effect? And progression goes on over many, many years, it is predominantly neurodegenerative so we need to think about different biomarkers; markers of tissue loss or tissue destruction rather than of inflammation, which is, in many ways, much easier and which we’ve been able to apply in relapsing-remitting MS. So that needs to be resolved. And there’s a lot of imaging work going on, and, indeed, other CSF biomarkers being looked at which might help us in that field.   And then going on to trials themselves. The current approach to trials is very lengthy, very costly, and not very innovative. And we need to think about news ways of looking at a number of different agents at the same time. And there are already examples, both in Europe and in the United States, where we’re starting to do that. So these are all areas where there’s movement. And I suppose what the Alliance has tried to do is really drive that, focus it and drive it forward in a true collaboration.   MSDF So there aren’t currently, at least in the US, any FDA-approved treatments for progressive MS. What specific types of treatments are you focusing on that you think will be most promising?   Dr. Thompson The treatments we have at the moment which we are you using in relapsing-remitting MS are fundamentally around suppressing inflammation, and that does not appear to be sufficient to have an effect on progression, and that’s probably not surprising. So I think the kind of approaches that we need to take with progression is around neuroprotection and also around repair. And these are more challenging; these are more challenging from a neuroscientific point of view, but also more challenging clinically. But that’s where we would expect the new trials to come out of those areas, particularly around neuroprotection.   MSDF Why is it challenging to study that scientifically?   Dr. Thompson Well, because neuroprotection is a concept at repair that we’re thinking about, not just for MS but for a whole range of neurological conditions, including Alzheimer’s, a motor neuron disease. And it’s challenging because you have to understand the underlying mechanisms and then you have to understand how your intervention is going to alter those. And that’s really getting to the heart of some of the most difficult questions in neuroscience.   MSDF It’s also my understanding that even just confirming that any of these drugs actually work in people is another challenge.   Dr. Thompson Yes. I mean, I think confirmation requires, first of all, a really reliable surrogate marker, but it also requires a clinical measure. And when you’re looking at a process which goes on over 30 years, trying to get a snapshot in two or three years is very difficult. And the clinical measures we have in MS are not very sensitive to change, and so there’s another major initiative called MOSAIC which is actually looking at trying to develop more sensitive measures that we could then apply in trials for progressive MS.   MSDF What is the future for the Progressive MS Alliance? How do you propose to go from this first round of grants towards a cure?   Dr. Thompson The Alliance is a new concept, and the idea of everybody working together internationally to solve a really difficult problem is very exciting. The RFA-1 was encouraging because there was so much interest. So it’s quite clear that in every country from North America to Australia, Europe, Asia, everybody feels this is the key question. So what I would like to see happening is we moving from these smaller grants to this international network of grants. So the RFA-2 will require major centers to come together to address very specific questions. Collaboration is the key for difficult questions, so I think this is the right approach.   We’re planning RFA-2 to be very iterative with the scientific steering committee so we can really try and get the very best out of it. This has to be transformational. If RFA-2 is successful and we’re putting three or four major pieces of research forward that will be costing between 4 and 5 million Euros, then we might think about building on that and becoming even more ambitious, drawing in even more resources internationally. And then perhaps – and hopefully – and the final aim, coming up with a treatment for progressive MS. [transition music]   Thank you for listening to Episode Thirteen of Multiple Sclerosis Discovery. This podcast was produced by the MS Discovery Forum, MSDF, the premier source of independent news and information on MS research. MSDF’s executive editor is Robert Finn. Msdiscovery.org is part of the non-profit Accelerated Cure Project for Multiple Sclerosis. Robert McBurney is our President and CEO, and Hollie Schmidt is vice president of scientific operations.   Msdiscovery.org aims to focus attention on what is known and not yet known about the causes of MS and related conditions, their pathological mechanisms, and potential ways to intervene. By communicating this information in a way that builds bridges among different disciplines, we hope to open new routes toward significant clinical advances.   We’re interested in your opinions. Please join the discussion on one of our online forums or send comments, criticisms, and suggestions to editor@msdiscovery.org.    [outro music]