Podcasts about frontotemporal degeneration

Surprise! We're back with a Season 9 Bonus Episode, and if you are so inclined, you can now WATCH this episode on Youtube. We sat down with our friends Esther Kane, MSN, RN-CDP, Support & Education Director and Sarah Lopata, Support Services Manager at the Association for Frontotemporal Degeneration to discuss the unique grief experience of FTD and many of its layers. Let us know on instagram what you think of this episode + the topics covered. Please share this episode with someone you think needs to hear it! SPECIAL THANK YOU TO THIS EPISODE SPONSOR The Association for Frontotemporal Degeneration Check out their grief resource, Walking with Grief: Loss and the FTD Journey here.

ALS, a nervous system disease, ruled the headlines in the summer of 2014 thanks to the viral Ice Bucket Challenge. How has our knowledge of the disorder evolved a decade later? Amyotrophic lateral sclerosis, also known as ‘Lou Gehrig's disease' (named after the iconic baseball player), is a progressive neurological disorder which breaks down a person's motor neurons. The main symptoms are muscle weakness and impaired physical function — mild, at first, but in the latter stages of the disease's progression, essential processes like breathing begin to fail. Most individuals face a life expectancy of two to five years. A small percentage live five to ten years. And an even tinier group survive beyond a decade. Most famously, renowned physicist Stephen Hawking survived more than 50 years past his diagnosis, in part due to the intensive care he was able to afford. In this episode of the ‘Your Brain On...' podcast, we discuss: • What ALS is, and how it affects the brain and the body • The onset and progression of ALS, from the earliest symptoms to the end-stage impacts • How ALS patients are diagnosed, treated, and cared for • Likely causes of ALS, including genetic predispositions and potential environmental risk factors • How new technologies are rapidly accelerating our understanding of ALS, especially in genetics Joining us for this installment of the show are two world-class experts on the disease: • Professor Ammar Al-Chalabi PhD, Professor of Neurology and Complex Disease Genetics at the Maurice Wohl Clinical Neuroscience Institute at King's College. • Merit Cudkowicz, Director of the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital. ‘Your Brain On' is hosted by neurologists, scientists and public health advocates Ayesha and Dean Sherzai. ‘Your Brain On... ALS' • SEASON 4 • EPISODE 3 ——— LINKS PROFESSOR AMMAR AL-CHALABI at King's College: https://www.kcl.ac.uk/people/ammar-al-chalabi at Motor Neurone Disease Disease Association: https://www.mndassociation.org/get-involved/cure-finders/professor-ammar-al-chalabi Project MinE: https://projectmine.com/ MERIT CUDKOWICZ at Massachusetts General Hospital: https://www.massgeneral.org/doctors/16904/merit-cudkowicz  at Harvard University: https://researchers.mgh.harvard.edu/profile/1520993/Merit-Cudkowicz ——— ANNOUNCING: NEURO WORLD RETREAT 2025 We're so excited to share something very close to our hearts, which we've been working on over the past few months: our first ever brain health retreat! You're warmly invited to join us in San Diego, California for the inaugural NEURO World Retreat 2025, taking place September 2–5, 2025 at the breathtaking Paradise Point Resort. For more information, and to book, visit: https://neuroworldretreat.com/ ——— FOLLOW US Join the NEURO Academy: NEUROacademy.com Instagram: @thebraindocs Website: TheBrainDocs.com More info and episodes: TheBrainDocs.com/Podcast ——— References: Brown, Robert H., and Ammar Al-Chalabi. "Amyotrophic lateral sclerosis." New England Journal of Medicine 377.2 (2017): 162-172. Benatar, Michael, et al. "A roadmap to ALS prevention: strategies and priorities." Journal of Neurology, Neurosurgery & Psychiatry 94.5 (2023): 399-402. Voigtlaender, Sebastian, et al. "Artificial intelligence in neurology: opportunities, challenges, and policy implications." Journal of Neurology 271.5 (2024): 2258-2273. Zinman, Lorne, and Merit Cudkowicz. "Emerging targets and treatments in amyotrophic lateral sclerosis." The Lancet Neurology 10.5 (2011): 481-490. Raghav, Yogindra, et al. "Identification of gene fusions associated with amyotrophic lateral sclerosis." Muscle & Nerve 69.4 (2024): 477-489. Su, Feng-Chiao, et al. "Association of environmental toxins with amyotrophic lateral sclerosis." JAMA neurology 73.7 (2016): 803-811. Talbott, Evelyn O., et al. "Case-control study of environmental toxins and risk of amyotrophic lateral sclerosis involving the national ALS registry." Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration (2024): 1-10.

Dr. Rita Jablonski blends clinical research with clinical practice, offering persons with dementia and their caregivers the best of both worlds.She is a tenured Professor at the University of Alabama at Birmingham School of Nursing, a Scientist in UAB's Alzheimer's Disease Center, a Scientist in UAB's Comprehensive Center for Healthy Aging, and has a faculty practice at the UAB Memory Disorders Clinic.Resources: Association for Frontotemporal Degeneration: https://www.theaftd.orgUAB Brain Aging and Memory Clinic: https://www.uab.edu/medicine/alzheimers/patient-care/memory-disorders-clinic

Meredith Burns' mother was a constant emotional presence in her life, there to offer support, advice and solace. When that began to change, Meredith, and the whole family, searched for an explanation. Was she depressed? Having a psychotic break? Less interested in supporting them? Over the years, it became obvious that there was a serious problem going on, one that all the medications that had been prescribed for her would not address. Finally, the diagnosis came; Frontotemporal Degeneration. What a terrible diagnosis to face! But knowing what was happening earlier would have saved her, and her whole family, from thinking she didn't care or that she needed a pharmacy of medications for things she didn't have. As a result of her own experience, Meredith has become an advocate for seeing the early signs of the disease and getting diagnoses as soon as possible.

Meredith Burns' mother was a constant emotional presence in her life, there to offer support, advice and solace. When that began to change, Meredith, and the whole family, searched for an explanation. Was she depressed? Having a psychotic break? Less interested in supporting them? Over the years, it became obvious that there was a serious problem going on, one that all the medications that had been prescribed for her would not address. Finally, the diagnosis came; Frontotemporal Degeneration. What a terrible diagnosis to face! But knowing what was happening earlier would have saved her, and her whole family, from thinking she didn't care or that she needed a pharmacy of medications for things she didn't have. As a result of her own experience, Meredith has become an advocate for seeing the early signs of the disease and getting diagnoses as soon as possible.

All Home Care Matters and our host, Lance A. Slatton were honored to welcome Esther Kane and Debbie Elkins from The Association for Frontotemporal Degeneration (AFTD).   About The Association for Frontotemporal Degeneration (AFTD):   Online at theaftd.org, AFTD is the largest national nonprofit devoted to providing resources to help families affected by FTD today, and advancing research to foster accurate diagnosis, treatments, and a cure. Our volunteer founded organization – driven by thousands of volunteers and donors – reflects a community's profound determination to #endFTD. With the FTD Disorders Registry, we are proud to partner with families, researchers, biopharma companies, state and federal policymakers, and health professionals across the country to improve care for people and families facing FTD – efforts that could ultimately be importance to all facing dementia or neurodegenerative disease.     About Esther Kane, MSN, RN-CDP:     Esther Kane, MSN, RN-CDP joined AFTD as its Director of Support and Education in November 2020. Previously, Esther served as Director of Wellness at CareOne Management, a company that provides elder-care services throughout the Northeast U.S. She brings clinical, educational, managerial, and marketing skills along with a passion for quality care for those who are living with neurological conditions. Her work reflects a strong commitment to the importance of education and training throughout the spectrum of diagnosis and delivery of quality care.     At AFTD, Esther ensures that support services and educational programs advance early diagnosis and improve access to quality care and effective support, and that that clinical information provided to healthcare professionals and the AFTD community is current and evidence-based.     Debbie Elkins, RN and AFTD Ambassador for West Virginia:     After her husband's journey to an FTD diagnosis, Debbie became an AFTD volunteer and hosted her first Food for Thought fundraiser. With a passion to raise awareness in her community and to make connections with others in rural areas of West Virginia and southeast Ohio, Debbie was invited to become an Ambassador in 2023.     Working with AFTD staff, she began provider outreach visits hoping to connect the local medical community and others to AFTD. As a registered nurse, Debbie hopes to use her voice to bring FTD awareness to the public, provide education, and point families to the “gold mine” of resources and support that AFTD offers.

In conclusion...it's our season finale... and we're wrapping up this series with our own little bow. Make sure to listen til the very end. And stay in touch, follow us on IG, and keep up to date on all things RM. You never know when you may get an encore *cough* bonus *cough* episode or two... Thank you all for your support and love. Sincerely, R+M -- We want to thank the entire ⁠⁠⁠⁠Penn FTD Center Team⁠⁠⁠⁠ for jumping in feet first, to our sponsors for their support and to our guests for openly sharing their stories.  For more support, resources, events, and all things RM, check out our website www.remembermeftd.com Special thank you to The Association for Frontotemporal Degeneration for their collaboration and support of our blogs this season! You can read up on all the important information + resources we curated together here. Remember Me is proud to work with ⁠⁠⁠⁠⁠⁠LearnFTD⁠⁠⁠⁠⁠⁠, by Alector in working to raise awareness of FTD.. For additional information and resources, visit ⁠⁠⁠⁠⁠⁠LearnFTD.com⁠⁠⁠⁠⁠ Thank you for supporting our work and for supporting the FTD community.  --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

Talk With A Docs: Wellness Brief sat down with Dr. Nancy Isenberg, a neurologist and the medical director of the Center for Healthy Aging. Dr. Isenberg also serves as the medical director of Providence's women's brain health program. In our discussion, we delved into the topic of primary progressive aphasia and frontotemporal dementia, which have been making headlines due to recent diagnoses of two well-known personalities, Bruce Willis and Wendy Williams. We sought out Dr. Isenberg to address the pressing questions we knew you would be curious about.If you would like additional information on primary progressive aphasia or frontotemporal dementia, here are the links to a couple of organizations Dr. Isenberg mentioned in our conversation with her.Homepage - The National Aphasia AssociationAFTD - The Association for Frontotemporal Degeneration (theaftd.org) 

All dementias don't look the same; they don't show up the same way that Alzheimer's disease does.  —Melissa Batchelor, PhD, RN, FNP, FGSA, FAAN Listen to today's episode where I talk about frontotemporal dementia (FTD), a rare kind of dementia. I'll walk you through how FTD is different from Alzheimer's disease and share insights into why seeking medical care is crucial if any of these symptoms are interrupting your life or the life of a loved one.   People with frontotemporal dementia tend to have clusters of symptom types that occur together like behavioral changes, speech and language symptoms, and movement conditions. The difficulty with FTD is that it can show up differently for different people and memory isn't usually affected in the early stages, so it's very difficult to diagnose. In fact, FTD is one of the rarest types of dementia. While around 6.5 million Americans ages 65 and above live with Alzheimer's disease, only 3% of those people have frontotemporal dementia.   IMPACT ON YOUNGER AGE GROUPS  Frontotemporal dementia mostly shows up in younger people, from as early as age 45 to 64, which is younger compared to other types of dementia. Due to inadvertent ageism in our healthcare system, providers may dismiss symptoms as something else because the person is younger than we typically expect a person to have cognitive issues.     EARLY WARNING SIGNS   It's important to note that the symptoms of frontotemporal dementia (FTD) can vary widely, and individuals may not exhibit all of these symptoms discussed in the podcast. However, one of the early signs of FTD often includes a change in personality or behavior, such as becoming socially inappropriate, impulsive, apathetic, or withdrawn. These psychiatric symptoms also delay getting to an accurate diagnosis or a misdiagnosis of depression or anxiety initially.   If you or someone you know is experiencing cognitive or behavioral changes, it is crucial to seek medical advice immediately.   CELEBRITIES' BATTLES WITH FTD   In the past year, two celebrities have been diagnosed with FTD, most notably Bruce Willis in February 2023; and in Feb 2024, Wendy Williams. Both are now bravely sharing their experiences with FTD to help raise awareness.    DIAGNOSTIC CHALLENGES AND BARRIERS   Just like with every other dementia, early symptoms of FTD can be subtle and often go unnoticed because they start slowly and progress over a long period of time. Another challenge is that FTD isn't as well-known as other types of dementia like Alzheimer's disease, making it hard for primary care doctors and even big academic medical centers to recognize it.   The process of diagnosing this type of dementia is a long journey, and can take up to 2 to 3 years of various appointments, ruling out other conditions, and talking to neurology experts to get to the correct answer/ diagnosis.   The more we all understand FTD better, we can take steps towards being a more compassionate and informed community.   You can learn more about FTD from the Association for Frontotemporal Degeneration. This organization can help people living with disease, their families and caregivers connect in person and with online support groups.    Their website is theaftd.org and they have a helpline. The helpline phone number is 866-507-7222. You can e-mail them at info@theaftd.org.    Be sure to check out more resources on my website at MelissaBPhD.com to learn more about brain health and dementia. And be sure to get your FREE downloads at:   10 Warning Signs: https://melissabphd.com/10warningsigns/   Diagnosis Checklist: https://melissabphd.com/diagnosischecklist/   ------------------------------------------------------------------------------------------------------------------------------- About MelissaBPhD   Melissa Batchelor, PhD, RN, FNP, FGSA, FAAN. I am a nurse, nurse practitioner, nurse Please visit my website at MelissaBPhD.com to learn more about me, how you can work with me directly, and/or support future episodes of the podcast. Within the first 18 months of launching this podcast, we reached a ranking of top 10% globally.    The best way you can help the podcast continue to grow is to LIKE the podcast with a thumbs up, SHARE the podcasts you like with others, SUBSCRIBE, and LEAVE A REVIEW. These things only take a minute of your time, but they really do help increase my rating and ranking; but more importantly, these actions help other people find the podcast.    For the most up-to-date news and information about the podcast and other products and services, please visit my website to sign up for my newsletter and follow me on social media.    If you are on Facebook, feel free to join my Group - look for This is Getting Old: Moving Towards an Age-Friendly World ~ and I'll see you there!    https://www.facebook.com/groups/249685261464834/  

Join us for a special NRSRN Lunch that will explore Frontotemporal disorders (FTD), sometimes called frontotemporal dementia.While the most common form of dementia among all age groups is Alzheimer's disease, Frontotemporal degeneration (FTD) is the most common for those diagnosed before age 60. It can occur as early as 21and as late as 80. FTD differs from other types of dementia in that memory loss is not a hallmark symptom. A group of related, heterogeneous disorders, initial symptoms bring progressive changes to personality, behavior, decision making, communication or movement. The Association for Frontotemporal Degeneration will present the signs and symptoms of FTD, the importance of early diagnosis and person-centered care, and highlight current research opportunities and support resources for those living with FTD and their care partners.Presented by Will Reiter, AFTD Education Program Manager and Jen Morabito, AFTD Ambassador, you'll hear both the family experience of this challenging disease and learn how it differs from other dementias as far as symptoms, support and care.Objectives:Learn how Frontotemporal degeneration (FTD) differs from other types of dementiaIdentify the common signs and symptoms of FTDLearn how this younger onset dementia impacts familiesDiscover helpful resources provided by The Association for Frontotemporal DegenerationPresenters:Will Reiter, MA | AFTD, Education Program ManagerWill joined AFTD in May 2021 as Education Program Manager. He works to expand AFTD's relationships with healthcare providers in order to support early FTD diagnosis and comprehensive person-centered FTD care. He has worked in the dementia field for more than 30 years. In a variety of local and regional settings, he has provided direct support and education to those living with dementia, care partners, and healthcare providers. William previously worked at the Family Caregiver Alliance in San Francisco as well as the Massachusetts/New Hampshire Chapter of the Alzheimer's Association. Most recently, he served as the Health Systems Director for the Alzheimer's Association, Delaware, New Jersey, and Pennsylvania region, initiating and strengthening connections to clinicians and regional health systems.Jen Morabito | AFTD Ambassador, MarylandJen first learned about AFTD after her mother was diagnosed with FTD in 2014. She began hosting events for AFTD's Food for Thought campaign, and became known for her Cindy's Cakes fundraiser. Soon after, she became a liaison to assist other Food for Thought hosts. Jen has been in close contact with volunteers and staff at AFTD, and has found a strong sense of community and support, which she wants to share with others. As an Ambassador, Jen is looking forward to working with individuals, groups, and agencies to support AFTD's mission of awareness, education, support, and advocacy.

SEASON 04: WICKED GOOD WELLNESS | EPISODE 03 The Sandwich Generation :: Caring for Aging Parents + Children with Maria Kent Beers Today's wicked good wellness episode is specifically for what is known as the "Sandwich Generation." Or, those in the middle of caring for their children, and aging parents. Some of us are already in this stage of life, while others of us know we probably will be in this stage in the future. After losing her beloved mother, Amalia, to Frontotemporal Degeneration in 2020, today's guest had a desire to share her mom and her experience as a caregiver to the world. And so, the seed for the Remember Me Podcast + Community was planted. Since its inception, the Remember Me Podcast has tripled its audience as the awareness for brain health, Alzheimer's and FTD continues to grow. Thank you for tuning into The Sandwich Generation :: Caring for Aging Parents + Children with Maria Kent Beers.  About Our Guest Maria Kent Beers is the co-founder and co-host of the Remember Me Podcast + Community. Maria has always had a love of radio and editing, receiving a TV Production Degree from Boston University where she was a host of BU In The Morning Radio Show. She also spent time at MTV Radio as an intern in NYC before falling into the world of fashion merchandising for 7 years. Maria has served as a guest speaker at Alzheimer's and caregiving conferences around the world, and continues to be a resource for others on the FTD journey. How to Keep in Touch  Remembermeftd.com Follow Maria on Instagram Listen to the Remember Me Podcast About Our Sponsor Boston Ballet School (BBS), founded in 1963, is housed in two convenient state-of-the art locations. The Boston studio, located in the historic South End of Boston, is also the headquarters of the Boston Ballet Company. The Newton studio, located 10 minutes outside of Boston, is Universal Design for Learning compliant. The incremental curriculum for students ages 16 months through adult begins in the Children's Program introducing students to the educational journey of dance training. Progressing into our Classical Ballet Program, students learn and grow in a professional ballet setting surrounded by world-class faculty and artists. BBS also offers Adaptive Dance classes designed to meet the needs of all abilities and an Adult Dance Program for continuing education. What is the Wicked Good Momcast? WHO | The Wicked Good Momcast is hosted by Shannon Gibson + Meghan Block, two local moms with a heart for community and with an undeniable connection that we hope you'll hear through our voices.  WHAT | In each episode, you'll hear from local + national experts in various spheres relevant to parenting, local moms and business owners who you should know about, and special guests! WHERE | You can listen wherever you listen to other podcasts! Please subscribe so you never miss an update! WHEN | New episodes drop the first and third Tuesdays of the month.  HOW | Are you someone we should interview? Is there a topic you want to be sure we cover? Are you a local brand looking to expand your marketing efforts with Boston Moms? Email shannon@bostonmoms.com to chat or share your thoughts – we would love to hear from you! APPLE PODCASTS | iHeart PODCASTS Links We Mentioned (Or Should Have...) https://bostonmoms.com/lifestyle/i-am-terrified-of-caring-for-my-aging-parents/  

While the most common form of dementia among all age groups is Alzheimer's disease, Frontotemporal Degeneration (FTD) is most common in those diagnosed before age 60 and can occur as early as age 21 and as late as age 80. FTD differs from other types of dementia in that memory loss is not a hallmark symptom. A group of related, heterogeneous disorders, initial symptoms bring progressive changes to personality, behavior, decision-making, communication or movement. In this podcast, the Association for Frontotemporal Degeneration will present signs and symptoms of FTD, emphasize the importance of early diagnosis and person-centered care, and highlight research opportunities as well as support resources for those living with FTD and their care partners.

Susan Dickinson, CEO of The Association for Frontotemporal Degeneration joined Bob Thomas to discuss Bruce Willis's diagnosis, the disease itself , and what the organization does.See omnystudio.com/listener for privacy information.

NEWS IN SIMPLE GERMAN - Nachrichten in einfachem DeutschEpisode 6 - Bruce Willis mit frontotemporaler Demenz diagnostiziert---Der weltweit bekannte Schauspieler Bruce Willis hat eine Diagnose von frontotemporaler Demenz (FTD) erhalten.Fast ein Jahr nach der Ankündigung, dass Bruce Willis aufgrund einer Diagnose von Aphasie vom Filmemachen zurücktreten würde, gab die Familie des amerikanischen Schauspielers bekannt, dass sich sein "Zustand verschlechtert hat".Im März des vergangenen Jahres zog sich Willis nach einer Sprachstörung namens Aphasie aus dem Schauspielgeschäft zurück.Die Krankheit führt zum Verlust der Fähigkeit, Sprache zu verstehen oder auszudrücken und hatte Willis' kognitive Fähigkeiten beeinträchtigt.In einer am vergangenen Donnerstag veröffentlichten Erklärung sagte die Familie des 67-Jährigen, dass Willis nun eine Diagnose von frontotemporaler Demenz (FTD) erhalten hat."Obwohl dies schmerzhaft ist, ist es eine Erleichterung, endlich eine klare Diagnose zu haben", hieß es in der Erklärung. "FTD ist eine grausame Krankheit, von der viele von uns noch nie gehört haben und die jeden treffen kann."Die 'Association for Frontotemporal Degeneration' beschreibt FTD als eine Gruppe von Hirnerkrankungen, die Verhaltens-, Sprach- und Bewegungsstörungen verursachen.Aphasie kann ein Symptom davon sein. Man rechnet mit einer durchschnittlichen Lebenserwartung von sieben bis 13 Jahren nach dem Beginn der Symptome."Zum heutigen Zeitpunkt gibt es keine Behandlung für die Krankheit.""Wir hoffen, dass sich diese Realität in den kommenden Jahren ändern wird", heißt es in der Erklärung der Familie.Die Erklärung wurde auf der Website der 'Association for Frontotemporal Degeneration' veröffentlicht und von Willis' Frau Emma Heming Willis, seiner Ex-Frau Demi Moore und seinen fünf Kindern unterzeichnet.In seiner 40-jährigen Karriere verdienten Willis' Filme weltweit mehr als 5 Milliarden US-Dollar an der Kinokasse.Der produktive Schauspieler wurde für Hits wie "Stirb Langsam" und "The Sixth Sense" geliebt. "Bruce hat immer Freude am Leben gefunden - und hat allen, die er kennt, geholfen, dasselbe zu tun", sagte die Familie am Donnerstag.---Ich hoffe, diese Folge hat Euch gefallen und würde mich freuen wenn Ihr diesen Podcast abonniert.Ich wünsche Euch einen angenehmen Tag und haltet die Ohren steif!Bye Bye!

Katie Zenger is the founder and lead consultant of Zenger Strategies, LLC, and has over eight years of professional experience managing and evaluating public health interventions and grant programs.    Katie's expertise lies primarily in public health program development and adolescent health promotion, as well as equitable healthcare access, community engagement, and nonprofit leadership. She is a skilled facilitator, strategic planner, and grant-writer, with experience in coalition-building and coordinating stakeholders for impact.    Katie served as a program officer and Director of Grants for a private SC foundation for over five years, where she expanded and refined the organization's multimillion-dollar contraceptive access and teen pregnancy prevention programs. Most recently, she managed a pediatric concussion project for the Brain Injury Association of South Carolina and a healthcare workforce taskforce for the SC Institute of Medicine and Public Health.    Katie also serves as a Senior Associate with The Weathers Group, where she provides qualitative research analysis services, develops detailed implementation plans, and provides custom reports as needed for special projects.    She has also provided strategic planning for numerous nonprofits, including Darkness to Light, Fact Forward, and the Women's Rights and Empowerment Network. Katie graduated from Clemson University in 2006 with a Bachelor of Science degree, and in 2011, she earned her Master's degree in Public Health and a Graduate Certificate in Women's and Gender Studies from the University of South Carolina's Arnold School of Public Health. Additionally, I'll be donating to and raising awareness for the charity or organization of my guest's choice with each episode now. This episode, the charity is The Association for Frontotemporal Degeneration, or The AFTD. Any and all donations make a difference! You can connect with Katie on: Website LinkedIn Inspired Speaking - Public Speaking Course To connect with me: Interested in working with me as your coach? Book a complimentary 15 minute call here. LinkedIn Instagram Website Subscribe to my weekly newsletter Please leave a review for this podcast on Apple Podcasts!   Resources/People Mentioned: The Gifts of Imperfection - Brené Brown Girl, Wash Your Face - Rachel Hollis The Desire Map - Danielle LaPorte The Four Tendencies - Gretchen Rubin Atomic Habits - James Clear Maintenance Phase Podcast - Aubrey Gordon & Michael Hobbes Headspace App Loving What Is - Byron Katie Psychic Pain - Pujol (Song) Shannon Ivey Public Speaking Center of NY Gallup Strengths Finder Yotam Schachter Ikigai

Today Barbara talks to Anna Ivara, whose son George, age 61, suffers from Frontotemporal Degeneration (FTD). Anna explains how FTD hit the language centers in George's brain, rendering him unable to speak or make any facial expressions. They discuss the differences between FTD and Alzheimer's, and how Anna found resources and support. To learn more about FTD, visit The Association for Frontotemporal Degeneration or watch the  60 Minutes special 

A diagnosis of frontotemporal dementia, or FTD, can rock a person’s world. Whether or not this was a diagnosis you anticipated, it can be difficult to grapple with the reality of it, for both the diagnosed patient and their family members.   There are a few reasons a diagnosis of FTD can be particularly devastating. For one thing, the majority of people diagnosed are younger than 70, so the last thing they expect is for their life to be uprooted by dementia. For another thing, there is no cure and no treatments available at the moment – even though researchers are working hard to change that. Still, there are ways for a person to maintain a meaningful quality of life for as long as possible, especially if the disease is diagnosed in its earliest stages.   If you or someone you love has received a diagnosis of FTD, we are here to support you and guide you through. We know that this is a difficult time – and it can feel daunting and overwhelming to plan ahead for an uncertain future. While you might feel helpless right now, know that there is hope. Treatments ARE getting better and there is support out there for anyone who needs it.   We’ve spoken on this podcast before about early onset Alzheimer’s, and FTD is similar in many ways – but I am sure if you are experiencing FTD you might be tired of people relating it to early onset. It’s important to remember that these are two separate diseases, although similar, and should be considered as such. For effective treatment and planning ahead to take place, it’s essential that patients understand their own individual diagnosis of FTD, separately from other similar diseases. That’s why today, we’ll be diving into exactly what happens to a person’s brain with FTD, the stages of the disease, and the best way to maintain a high quality of life after diagnosis.     We hope that by the end of this episode, you’ll feel less daunted and more supported – and that you have a clear understanding of what this disease really is and what it might mean for the days and years ahead. This is not a diagnosis that you chose, caused, or have much control over – but you do get to choose how you can live each day as meaningfully as possible. Even when the disease is in its later stages, your caregivers can do what they can to make every single day count.   Whether you’ve received a diagnosis or someone you love is experiencing FTD, furthering your knowledge of the disease and understanding exactly how it impacts the brain will give you a much better idea of why you are feeling or behaving in a certain way. If your loved one has FTD, then knowing more about how the disease functions will help you to understand those parts of FTD that might feel especially frustrating or disheartening – particularly changes in personality and behavior.   We want to start with a reminder that you are not alone. While FTD can feel extremely isolating, particularly if you are young and do not know anyone in your personal life who is experiencing the disease, about 50,000 to 60,000 Americans are living with the disease today, according to The Association for Frontotemporal Degeneration. That might seem like a small number compared to other diseases – but it’s large enough that support networks, including specialized therapists and counseling groups, are out there.   Now, we mentioned earlier that many people with FTD might be compared with those who have early onset Alzheimer’s disease. We also mentioned the importance of distinguishing between the two diseases – because while they are similar, they are marked by key differences. For the sake of understanding what makes FTD different than Alzheimer’s, let’s compare.   FTD patients are most commonly diagnosed between the ages of 45 and 65, while the vast majority of Alzheimer’s diagnoses occur in the later stages of a person’s life (early onset is a rare exception). Most notably, though, memory loss is not as prevalent of a symptom in FTD patients.   FTD, especially in its early stages, mainly affects language and behavior, while Alzheimer’s targets memory loss. Now, FTD patients can suffer from memory loss, especially as the disease progresses, but it is not the primary symptom. The first symptom in most FTD patients is behavioral changes, which is one of the later symptoms in Alzheimer’s patients.   FTD patients tend to have more difficulties with speech and communication than Alzheimer’s patients. It can be difficult for an FTD patient to make sense while they are speaking, or for them to make sense of what others are saying to them. In Alzheimer’s patients, communication issues tend to center around remembering names or important information, rather than understanding the concept of what someone is saying. In the later stages of Alzheimer’s, they are more likely to struggle with making sense of language, but this isn’t always the case.   Finally, patients with FTD rarely suffer from hallucinations and delusions, which are common in people with Alzheimer’s disease. This, along with memory loss, are two of the most significant differences between FTD and Alzheimer’s.   In fact, the lack of memory loss in FTD patients, combined with the young age that most FTD patients get the disease, makes achieving a diagnosis particularly challenging. Doctors tend to look for memory loss as one of the leading causes of dementia, and they tend to focus on age. Too often, a person with FTD will be misdiagnosed with depression or other mental illness because of their behavioral changes.   Understanding the differences between Alzheimer’s and FTD is just the first step to having a clear idea of what FTD is and what it means for the lives of those diagnosed (and the lives of their friends and family members). To further our understanding of the disease even more, let’s get into how it actually affects the human brain.   Navigating a life with FTD starts with understanding the disease itself. When we have a comprehensive idea of what our brain is experiencing during FTD, we can better understand our own symptoms and plan ahead accordingly.   As the name implies, Frontotemporal Dementia affects the frontal and temporal lobes of the brain. These areas of the brain are critical to learning, communicating, and empathizing. In FTD patients, the frontal and temporal lobes are suffering from nerve cell damage and death. As the nerve cells in the frontal and temporal lobes are damaged, connections between the cells are broken. These connections are what allows the brain to send signals to itself and the rest of the body. As the nerve cells die or malfunction, the brain tissue in the frontal and temporal lobes actually starts to shrink.   FTD comes in two forms – Behavioral Variant FTD, which is the most common, and Primary Progressive Aphasia or PPA. PPA and Behavioral Variant FTD affect the brain in different ways.   In Behavioral Variant FTD, the frontal lobe is most severely damaged. The frontal lobe affects how a person behaves, plans, problem solves, focus, and process emotions. Suffice it to say, when this lobe experiences damage, it leads to major changes in personality and behavior.     In Primary Progressive Aphasia, the temporal lobes suffer the most damage. The temporal lobes control much of our understanding of language – they store the meanings of words, the names of objects, and how we recognize important people, places, and things.   In addition to Primary Progressive Aphasia and Behavioral Variant FTD, FTD can also be linked to two very rare neurological diseases that affect mobility. These are corticobasal syndrome (CBS) and progressive supranuclear palsy (PSP).   CBS occurs when nerve cells die in parts of the brain that control movement – most commonly, arms and hands are impacted. CBS patients can suffer from orientation and language problems, but this is not always the case.   PSP affects a person’s ability to walk and maintain balance. Body stiffness, ability to make facial expressions, and falls are common in this disorder. Most people with PSP will struggle to move their eyes – the most differentiating feature between PSP and Parkinson’s. People with PSP can also suffer from memory issues, behavioral changes, and difficulty problem solving.   The symptoms of FTD vary depending on the type of FTD a person has. In Behavioral Variant FTD, early symptoms include lack of focus and motivation, difficulty making decisions, struggling to make plans, loss of inhibitions, lack of empathy, repetitive behaviors, and changes in diet – particularly cravings for junk food. Other signs of Behavioral Variant FTD are ultra-sensitivity to temperature and sound.   You might find that you never want to get up from the couch or turn off the TV, that where you were once social and loved being out with friends, now you’d rather stay inside. You might lash out on friends and family or say whatever it is you’re thinking – even if it’s not appropriate or polite. For this reason, depression is a common diagnosis for people in the early stages of FTD. Personality changes, particularly a loss of inhibition, might be a sign that something even worse than depression is to blame. If you or your loved one has seemed to lose their filter or is acting erratically, you should take them to a neurologist for an FTD evaluation as soon as possible.   One tough reality of FTD is that most patients will not be totally aware that something is wrong. While friends or family might notice behavioral changes, a person with FTD might deny that anything is wrong. While it might be frustrating to see your loved one deny that there’s a problem or refuse to seek medical help, try to remember that this is not on purpose. Many people with FTD genuinely do not realize that there is a problem and might even be offended that others believe something is wrong.   Because many people with FTD do not recognize that there is a problem and refuse to see a doctor, a diagnosis can take a long time. It can seem nearly impossible to convince a family member with FTD to make an appointment, and the last thing anyone wants to do is drag their loved one kicking and screaming into their GP’s office. If you are struggling to convince your loved one to see a doctor, you might want to consider talking to them about making an appointment for depression or another issue that might be affecting them. At that appointment, you can speak to their doctor about evaluating them for FTD.   Symptoms of Primary Progressive Aphasia FTD are mainly centered around language. If you or your loved one is having difficulty remembering the meaning of words or finding the right word for something, they might be suffering from PPA. A person with PPA might use the wrong word to describe something – like calling a chair a couch or a door a window. For some objects, they might not be able to say any word at all.   At the same time, PPA patients might ask what a specific word means, particularly one that they might not use as often. For instance, a person might ask what a jacuzzi is if they see one on TV, or ask what pasta is if they’re having it for dinner.   PPA patients might also not remember how to use objects that were once familiar to them. They might not know how to put the leash on the dog, or even what it’s used for, or forget how to hold a spatula. This symptom tends to arise in the later stages of PPA, but it can occur earlier on. Because diagnoses tend to occur after the disease has already progressed, this is still a symptom you should be on the lookout for pre-diagnosis.   Commonly, a person with PPA will also have trouble reading and writing. They might spell familiar words wrong, forget how to write their name, or write phonetically. For instance, if they are trying to write “k-n-o-w” they might instead write “n-o.”   Treatment for PPA patients is centered around helping a patient maintain their grasp of language while also finding new ways to communicate. Many PPA patients use notebooks to communicate, or else charts where different sayings and objects are drawn out for them to point to. Asking “yes” or “no” questions is also an effective way to communicate with someone with PPA. While these methods can be successful in the early stages of the disease, communication of any kind will become more difficult as it progresses. A person with PPA should meet with speech-language pathologists and therapists to come up with a plan that best fits their needs and abilities.   Unfortunately, there are no more concrete treatments at the moment for patients with PPA or Behavioral Variant FTD. Researchers are working to better understand the disease so they can identify new drugs and treatments to help. At the moment, there are many clinical trials that are testing new therapies and methods for treatments. Some patients might consider speaking to their doctor about participating in a trial.   Still, there are ways for a person to have a high quality of life after a diagnosis. Most beneficial, according to The Association for Frontotemporal Degeneration, is finding a daily routine that keeps the patient active, healthy, and stimulated.   The Association for Frontotemporal Degeneration explains that, “the formula is to maintain social relationships as much as possible and adapt interests, accomplishments, and memories into activities that match the person’s current functioning. For example, if competitive poker or bridge was a favorite social activity, playing a more casual or simpler version with fewer rules if needed can engage the person, connect with that part of his past, and provide a meaningful way to interact with others.”   The more you can stimulate the mind while adhering to the needs and comfort of the person diagnosed, the better. Jessica Crawford, the writer of the blog FTD and Me, in which Crawford shares her experience caring for her mother before and after an FTD diagnosis, said that she tried many activities until she found one that successfully engaged her mother’s mind and made her genuinely happy: a spa day. She found that the spa day was especially effective because her mother used to love getting her hair and nails done and “feeling pretty,” and being at the spa was a relaxing and calm environment that did not overstimulate her. She even managed to call ahead and arrange an appointment for after-hours so the spa was not crowded with strangers, who may have intimidated her mother.   The activities you engage with or have your loved one engage with will change over time as the disease progresses, but it is important that new activities are found whenever possible. In the more advanced stages of the disease, it might be helpful to seek out support groups or community resources that specialize in FTD patients. Many groups will hold activity nights catered toward FTD patients that can be extremely rewarding to take part in.   Life with FTD is not easy – but with the right resources and support network, a person can continue to stay engaged, active, and most of all – not feel so alone.   We want to thank you for joining us here at All Home Care Matters, All Home Care Matters is here for you and to help families as they navigate long-term care issues. Please visit us at allhomecarematters.com there is a private secure fillable form there where you can give us feedback, show ideas, or if you have questions. Every form is read and responded to. If you know someone is who could benefit from this episode, please share it with them. Remember, you can listen to the show on any of your favorite podcast streaming platforms and watch the show on our YouTube channel and make sure to hit that subscribe button, so you'll never miss an episode. On the next episode of All Home Care Matters we will be discussing Tips for Helping to Avoid Bed Sores.   Here are the sources used for this episode:   https://www.ftdandme.co.uk/   https://www.hopkinsmedicine.org/health/conditions-and-diseases/dementia/frontotemporal-dementia#:~:text=Frontotemporal%20dementia%20(FTD)%2C%20a,personality%2C%20language%2C%20and%20movement.   https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/frontotemporal-dementia   https://www.alzheimers.org.uk/about-dementia/types-dementia/frontotemporal-dementia   https://memory.ucsf.edu/dementia/ftd   https://www.nia.nih.gov/health/treatment-and-management-frontotemporal-disorders   http://ftd.med.upenn.edu/living-with-ftd-related-disorders   https://www.helpinghandshomecare.co.uk/blog/living-with-frontotemporal-dementia/   https://www.alzheimers.net/11-7-14-caregivers-frontotemporal-degeneration   https://www.crisisprevention.com/Blog/Caring-for-Persons-With-Frontotemporal-Dementia-FT   https://www.theaftd.org/living-with-ftd/coordinating-care/   https://www.alzheimers.gov/life-with-dementia/planning-for-future   https://www.theaftd.org/wp-content/uploads/2009/03/AFTD-40-pg-booklet-NewDiag_Website.pdf   https://www.asccare.com/stages-of-frontotemporal-dementia/   https://www.brightfocus.org/alzheimers-disease/article/what-are-stages-frontotemporal-dementia   https://www.nia.nih.gov/health/types-frontotemporal-disorders              

Rachael and Maria interview CEO Susan Dickinson to learn more about the Association for Frontotemporal Degeneration (The AFTD). We talk about research, resources for caregivers and more. This episode is also an intro into our Remember Me x AFTD Collaboration on the Annual With Love campaign, launching in February Learn more about The AFTD at theaftd.org Remember Me is a podcast created by two moms who became fast friends on Instagram. It features stories of Frontotemporal Dementia (FTD) with a focus on remembering individuals for who they were before the disease. The stories shared are raw, real, and so full of love. We hope it inspires you to "accept the good." Follow us on Instagram @remembermepodcast Visit our website www.remembermeftd.com

Rabbi Cantor Vicki Axe discusses frontotemporal degeneration -- FTD -- and her experience as caregiver to her husband when he was diagnosed with the progressive condition. The post Frontotemporal degeneration and dementia and its toll on caregiver families, discussed on Seekers of Meaning TV Show and Podcast appeared first on Jewish Sacred Aging.

Rabbi Cantor Vicki Axe discusses frontotemporal degeneration -- FTD -- and her experience as caregiver to her husband when he was diagnosed with the progressive condition. The post Frontotemporal degeneration and dementia and its toll on caregiver families, discussed on Seekers of Meaning TV Show and Podcast appeared first on Jewish Sacred Aging.

A Featured Conversation from UsAgainstAlzheimer's 2019 National Alzheimer's SummitThe fight against Alzheimer's, frontotemporal degeneration, and other dementias is driven by the stories of those on the front lines—people living with the disease and their care partners. "A priest, a marine, a journalist and a millennial walk into a bar ..." Four diverse advocates offer a glimpse into their lives, connected by a common mission to stop this disease. At times funny and surprising, but powerful throughout, this conversation reveals how and why these advocates share their personal stories: to disrupt the status quo, shatter stigma, improve brain health, educate physicians, speed research and improve the lives of others facing this disease now and in the future.Alzheimer's Talks host Meryl Comer—Alzheimer's care partner, Founding Board Member of UsAgainstAlzheimer's, and Chair of the Global Alliance on Women's Brain Health—moderates this discussion with:The Very Rev. Tracey Lind, retired Episcopal minister and city planner, living with frontotemporal degenerationAndrés Martin, U.S. Marine with the Jalisco genetic mutation linked to early-onset Alzheimer’sConor O’Brien, millennial care partner, son of Greg O’BrienGreg O'Brien, journalist, award-winning author, UsAgainstAlzheimer's Board Member, living with Alzheimer’sSupport the show (https://www.usagainstalzheimers.org/ways-donate)

Deborah Dolan is a volunteer with The Association for Frontotemporal Degeneration. She's a retired geriatric care manager, and her husband Todd had bv.FTD. In this episode of Navigating Rough Terrain with the Dementia Sherpa, Deborah tells her and Todd's story, including the challenges in getting a correct diagnosis and insights on care partnering with a person with bv.FTD. We also give you a preview of the upcoming AFTD National Conference May 3, 2019 in Los Angeles. Complete resource links at DementiaSherpa.com/episode86.  

Dr. Patty, along with guests Connie Spooner and Lillian Deeble, discuss caregiving the terminally ill. All three women had husband's who suffered from Frontotemporal Degeneration and all three cared for their men for over ten years. Learn how you can survive caregiving or how you can help a caregiver you know.

I'm very excited to share my interview with my friend Pam McGonigle. Pam is in her late 40s and living in Ardmore with her husband and son. She is a development manager at The Association for Frontotemporal Degeneration.

Atlanta artist Tori Tinsley takes a break from her busy studio practice to talk with Peachy Keen about returning to her own art after working for years as an art therapist, how her mother's intrepid personality inspired her to push her own career, and how her work has developed alongside the loss of her relationship with her mother due to Frontotemporal Degeneration. She explains to the 90% of us who don't know what the other meaning of the phrase "bread and butter" is (hint: it's not what makes you the money), shares some of the best feedback she got in grad school, and breaks down the logistics of making her first large scale mural for the Zuckerman Museum of Art.

Alice Saunders is the creator of Forestbound, a Boston-based company that makes and sells canvas and leather bags made from historic textiles. Alice is also a super speedy runner and marathoner. She started running later in life, and now boasts some pretty serious PRs, including a 3:19 marathon and a 1:37 half marathon. In this episode, Alice and I talk about how she created Forestbound, why she started running (for a good cause!), and our unathletic pasts — including our best strategies for skipping out on the mile during gym class in fifth grade. (Plus a few hot takes about important things like pineapple pizza.) We’re also hosting a giveaway with this episode! One lucky listener will win Alice’s famous ESCAPE Canvas Utility Bag. (You’re going to want this bag. It’s the best.) To enter, leave a rating and review on iTunes (http://apple.co/2kDx0zz) before Tuesday, February 21. I’ll pick a winner at random and will announce the lucky ESCAPE bag winner on next week’s episode. Show Notes Forestbound: http://www.forestbound.com/ ESCAPE bag: http://www.forestbound.com/collections/escape-canvas-bag Forestbound Long May They Run line: http://www.forestbound.com/collections/long-may-they-run The Association for Frontotemporal Degeneration: http://www.theaftd.org/ SHAPE Women’s Half Marathon: http://www.nyrr.org/races-and-events/2017/shape-womens-half-marathon Eugene Marathon: http://www.eugenemarathon.com/ Sarah Bard: https://sarahjbard.com/ Follow Alice: Instagram: https://www.instagram.com/forestbound/ Twitter: https://twitter.com/Forestbound Website: http://www.forestbound.com/ Follow Ali: Instagram: https://www.instagram.com/aliontherun1 Twitter: https://twitter.com/aliontherun1 Blog: http://www.aliontherunblog.com/ Thank you for listening to and supporting the Ali on the Run Show! If you’re enjoying the show, please subscribe and leave a rating and review on iTunes (http://apple.co/2kDx0zz). Spread the run love!

1) Progression of brain atrophy in PSP and CBS over six months and one year2) What's Trending: Interview with Mike Amery about Medicare Sustainable Growth Rate repeal and the Medicare Access and CHIP Reauthorization Act 3) Topic of the month: How to examine and approach movement disordersThis podcast for the Neurology Journal begins and closes with Dr. Robert Gross, Editor-in-Chief, briefly discussing highlighted articles from the print issue of Neurology. In the second segment Dr. John Morgan interviews Dr. Adam Boxer about his paper about on progression of brain atrophy in progressive supranuclear palsy and corticobasal syndrome. Dr. Ted Burns is interviewing Mike Amery for our “What's Trending” feature of the week about Medicare Sustainable Growth Rate repeal and the Medicare Access and CHIP Reauthorization Act. In the next part of the podcast Dr. Alberto Espay interviews Dr. Rodger Elble on the topic of “how to approach” tremor disorders.DISCLOSURES: Dr. Morgan is a consultant for Impax, Lundbeck Inc., National Parkinson Foundation, Teva Pharmaceutical Industries Ltd., and Veloxis; serves on the speakers' bureau of Impax and Teva Pharmaceutical Industries Ltd.; received compensation for review of medical records and expert witness testimony in multiple cases of litigation involving neurologic co; receives research support from National Parkinson Foundation, Parkinson's Outcome Project Grant and the NIH.Dr. Boxer serves on the scientific advisory board for Alector, Asceneuron and Delos; received funding for travel from the International Society for CNS Clinical Trials Methodology, the Movement Disorders Society, the Association for Frontotemporal Degeneration, Fidelity Biosciences Research Institute and the Tau Consortium; is a consultant for Abbvie, Ionis, Janssen and Merck Serono; holds stock options in Alector and Delos; receives research support from Avid, Biogen Idec, BMS, C2N, Cortice, Forum, Genentech, Inc., Janssen, Pfizer Inc, Eli Lilly and Company, Roche, TauRx, The Tau Research Consortium, the Bluefield Project, Corticobasal Degeneration Solutions, the Alzheimer's Association and the NIH.Dr. Ted Burns serves as Podcast Editor for Neurology®; and has received research support for consulting activities with UCB, CSL Behring, Walgreens and Alexion Pharmaceuticals, Inc.Dr. Amery is employed as Legislative Counsel for the American Academy of Neurology.Dr. Espay serves as Associate Editor for the Journal of Clinical Movement Disorders; serves as an editorial board member of Parkinsonism and Related Disorders and The European Neurological Journal; serves on the scientific advisory board for Solvay Pharmaceuticals, Inc. (now Abbvie), Chelsea Therapeutics International, Ltd., Teva Pharmaceutical Industries Ltd., Impax, Merz Pharmaceuticals, Inc., Pfizer Inc, Solstice Neurosciences, Eli Lilly and Company, ACADIA Pharmaceuticals, Inc. and USWorldMeds; is a consultant for Chelsea Therapeutics International, Ltd., Solvay Pharmaceuticals, Inc. (now Abbvie), ACADIA Pharmaceuticals, Inc., Cynapsus and Lundbeck, Inc; receives royalties for publications of books from Lippincott, Williams & Wilkins and Cambridge University Press; serves on the speakers' bureau of UCB, Teva Pharmaceutical Industries Ltd., American Academy of Neurology and Movement Disorders Society; receives research support from the CleveMed/Great Lake Neurotechnilogies, Michael J. Fox Foundation and the NIH.Dr. Elble receives research support from GlaxoSmithKline, Teva Pharmaceutical Industries Ltd., Phytopharm, Pfizer Inc, Ortho-McNeil, Spastic Paralysis Research Foundation of Kiwanis International, Illinois-Eastern Iowa District and the NIH.

1) Neurology® Neuroimmunology & Neuroinflammation: Rituximab in treatment-resistant CIDP with antibodies against paranodal proteins and 2) Topic of the month: Neuromyelitis optica. This podcast for the Neurology Journal begins and closes with Dr. Robert Gross, Editor-in-Chief, briefly discussing highlighted articles from the print issue of Neurology. In the second segment Dr. Kelly Gwathmey interviews Dr. Isabel Illa about her Neurology: Neuroimmunology & Neuroinflammation paper on rituximab in treatment-resistant CIDP with antibodies against paranodal proteins. Dr. Ted Burns is interviewing Dr. Murray Grossman for our “What's Trending” feature of the week about his paper on the classification of primary progressive aphasia and its variants. In the next part of the podcast Dr. Stacey Clardy interviews Dr. Jeff Bennett about the topic of latest developments in neuromyelitis optica using his antibody library. The participants had nothing to disclose except Drs. Illa, Burns, Grossman, Clardy and Bennett.Dr. Illa received a travel grant from Genzyme; serves as an editorial board member of Neurologia; holds a patent for Dysferlin detection in monocytes; has consulted for Grifols; received research support from Fondo de Investigaciones Sanitarias and ISCIII, Ministry of Health (Spain), Fundacion Gemio.Dr. Ted Burns serves as Podcast Editor for Neurology®; and has received research support for consulting activities with UCB, CSL Behring, Walgreens and Alexion Pharmaceuticals, Inc.Dr. Grossman serves on the scientific advisory board for Forum; serves as an editorial board member of Neurology®, Journal of Neurolinguistics, Journal of Alzheimer's Disease; serves on the editorial advisory board for Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration; receives research support from Wyncote Foundation, ALS Association and the NIH; received travel funding for a site visit from Max-Planck Society.Dr. Clardy receives research support from the Western Institute for Biomedical Research.Dr. Bennett serves on the scientific advisory board for Apsara Therapeutics; serves as an editorial board member of Journal of Neuro-ophthalmology, Multiple Sclerosis Journal and Neurology® Neuroimmunology and Neuroimflammation; has patents for compositions and methods for the treatment of neuromyelitis optica and novel blocking monoclonal therapy for neuromyelitis optica; is a consultant for EMD-Serono, Questcor Pharmaceuticals, Alnaylam Pharmaceuticals, Medimmune, Abbvie, Novartis, Chugai Pharmaceuticals Co., Ltd., Genzyme Corporation, Genentech, Inc.; receives license fee payments from Aquaporumab; has rights for future royalty payments from Aquaporumab; holds stock options in Apsara Therapeutics; receives research support from Questcor Pharmaceuticals, Novartis, NIH and Guthy-Jackson Foundation.NO CME WILL BE OFFERED THIS WEEK.

1) How C90orf72 promotor hypermethylation is neuroprotective and 2) Topic of the month: Implementation of genetic testing. This podcast for the Neurology Journal begins and closes with Dr. Robert Gross, Editor-in-Chief, briefly discussing highlighted articles from the print issue of Neurology. In the second segment Dr. Ted Burns interviews Dr. Corey McMillan about his paper on how C90orf72 promotor hypermethylation is neuroprotective. Dr. Sarah Wesley is reading our e-Pearl of the week about paraneoplastic cerebellar degeneration. In the next part of the podcast Dr. Ted Burns interviews Dr. Daniel MacArthur about the variants of unknown significance. The participants had nothing to disclose except Drs. Burns, McMillan and Wesley.Dr. Ted Burns serves as Podcast Editor for Neurology®; and has received research support for consulting activities with CSL Behring and Alexion Pharmaceuticals, Inc.Dr. McMillan received payment for being plenary speaker at the 2015 International Conference on Frontotemporal Degeneration; and receives research support from the NIH.Dr. Wesley serves on the editorial team for the Neurology® Resident and Fellow Section.

Clotilde Lagier-Tourenne, Assistant Investigator, Ludwig Institute for Cancer Research, Assistant Professor, Department of Neurosciences, University of California, San Diego, La Jolla - USA - speaks on "Targeted degradation of sense and antisense C9orf72 RNA foci as therapy for ALS and frontotemporal degeneration - RNA Metabolism: Changing Paradigms in Neurodegeneration” This seminar has been recorded at Area Science Park Trieste by ICGEB Trieste