Podcasts about huntington's disease

Pay What You Can: www.paywhatyoucanpeersupport.com/faqs  Alliance of Hope: www.allianceofhope.org or phone number is 847-868-3313 National Suicide Hotline:   If you live in the US, contact the National Suicide Prevention Lifeline by calling 988 or texting “Hello” to 741741. Their website is www.988lifeline.org   They also have a chat option and services for deaf/HoH  For other countries, visit this website: www.allianceofhope.org/feeling-suicidal  HDSA Telehealth: www.hdsa.org/find-help/community-social-support/hdsa-telehealth/  You can also contact them by emailing HDSAinfo@HDSA.org or calling their Helpline at 800-345-4372

Erika (HD Reach) and Lauren (Help4HD Podcast) talk with Clinical Social Worker and Hospice Supervisor Shivani Borah about Hospice and the end-of-life process. We discuss medications, advanced directives, and the myths and misunderstandings surrounding Hospice care. Join us as we dive into a very difficult topic openly and honestly. The link to the webinar can be found here: https://www.youtube.com/watch?v=e1CxsZP5f8o

HD Uncut: Days of Our Lives

The Help 4 HD Resource Database has a resource called mRelief, which is a nonprofit that helps you determine eligibility and sign up for SNAP and other supplemental programs by using a quick survey via text message. You can text the word “Food” to 74544 to complete the screening survey over text or visit their website at www.mrelief.com.   www.hungerfreeamerica.org Full Cart, which is a national food assistance program available to individuals and families who are facing financial hardships and food insecurity. www.fullcart.org.   Dysphagia Outreach Project and they have a Dysphagia Food Bank program: www.dysphagiaoutreach.org/apply-for-assistance.  www.lasagnalove.org/request www.helpingamericansfindhelp.org/christmas-assistance-help-by-state. Reddit page “Santa's Little Helpers”. Parents and caregivers can submit requests for toys or other gifts for their children or loved ones and the general population can donate those items directly to you. They also have great suggestions of where else to find gifts for your loved ones and free or very low-cost activities to do with your families instead of gifts. You can find the Reddit page at www.reddit.com/r/SantasLittleHelpers.

Update about Sage Therapeutics with Lauren Holder

In this episode of the Brain & Life podcast, author Tanita Allen joins Dr. Katy Peters to discuss her experience with Huntington's Disease and how it inspired her to write her book We Exist. Tanita shares about the rocky diagnosis process, how she manages day-to-day symptoms, and why she was called to share her story in a book. Dr. Peters is then joined by Dr. Katie Moore, Assistant Professor of Neurology and Associate Director of the Neurology Residency Program at Duke University Medical Center. Dr. Moore explains what Huntington's Disease is, dispels some diagnostic myths, and what patients and caregivers can look forward to in the future.   We invite you to participate in our listener survey! By participating in the brief survey, you will have the opportunity to enter your name and email address for a chance to win one of five $100 Amazon gift cards.   Additional Resources We Exist by Tanita Allen What is Huntington's Disease? Promising Therapies May Help Huntington's Disease Huntington's Disease Society of America   Other Brain & Life Episodes on this Topic Rare Thoughts on a Rarer Neurologic Condition We Are Brave Together with Jessica Patay Author, Speaker Jackie Stebbins on Rebuilding Her Life After Autoimmune Encephalitis   We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? ·       Record a voicemail at 612-928-6206 ·       Email us at BLpodcast@brainandlife.org   Social Media:   Guests: Tanita Allen @tanitaallen234; Dr. Katie Moore @dukeneurores Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

If you'd like to check out the video, here's the link: https://youtu.be/NTiqiAeBMOw

Please visit the Rare Patient Voice website for more information, or reach out to Lauren Holder at lauren@help4hd.org WES MICHAEL Founder and President, Rare Patient Voice Wes Michael founded Rare Patient Voice in 2013 to give patients and family caregivers the opportunity to voice their opinions through taking part in research studies. Rare Patient Voice has now recruited for thousands of studies and rewarded patients and family caregivers with over $13 million for their participation. Many have been recruited in person by Wes and his team at patient events and through a robust referral program with patient advocacy and support groups. Rare Patient Voice now covers over 1,500 rare and non-rare diseases and conditions and has expanded from the United States to Canada, the United Kingdom, France, Germany, Italy, Spain, Australia, and New Zealand. Before launching Rare Patient Voice, Wes worked for healthcare market research firm Kantar Health. He previously was a brand manager and market research manager at McCormick (the spice company) and General Mills (working on Wheaties, Total and Kix cereals). He has a BA from the University of Pennsylvania (with a year at Edinburgh University) and an MBA from the University of Chicago. Wes lives outside Baltimore, Maryland, with his wife, Cathy, children Julia and Cliff, grandson Taylor, and dog Stanley.

Lauren Holder recently did a webinar with HDYO's Jenna Heilman, Prof. Hugh Rickards, and HDYO Ambassador Molly about breaking down barriers when it comes to access to a potential treatment. You can watch the full video here: https://www.youtube.com/watch?v=y6CrrVGfBTk Breaking Down Barriers is sponsored by Roche, Sage Therapeutics, Teva Pharmaceutical, uniQure, Wave Life Sciences, The Griffin Foundation, Neurocrine Biosciences and PTC Therapeutics.

Our Lived Experience (Panel from Help 4 HD Symposium)

Helpful information on being prepared for a disaster: https://www.ready.gov/disability Information about FEMA: https://www.disasterassistance.gov/ Here are some tips for people with disabilities to prepare for disasters:  Make a plan Create a network of people who can help you in an emergency, and keep their contact information in a safe place. You can also consider giving a trusted person a key to your home.  Prepare for evacuation Make sure your home's exits are wheelchair accessible, and practice emergency evacuation drills with your family and personal care attendant. Also, plan for accessible transportation in case you need to evacuate or get around during or after a disaster.  Prepare an emergency kit Include items to meet your individual needs, such as extra batteries for your wheelchair, medications, and a medical alert system. If you are deaf or hard of hearing, you can include a weather radio with text display, extra hearing aid batteries, and a TTY. If you are blind or have low vision, you can include Braille labels or large print on your emergency supplies.  Register with your local emergency management office Many cities and counties have voluntary registries for people with disabilities.  Know your capabilities Consider what you will be able to do for yourself and what assistance you may need.  Prepare for different hazards Think about how to prepare for different hazards that could impact your community, and what your alternative shelter will be. 

HD Uncut: Thoughts from Strasbourg

For more information about the UF Fixel Institute located in Gainesville, FL, please click here.

HDYO Ambassador: Molly

To read the blog post BJ Viau wrote, please click here

HDYO Ambassador Gemma

"Bri" joins me to discuss what it's like being gene-positive for HD and a scientist doing HD research.

Please contact Jenna Heilman if you're interested in learning more about the HDYO Ambassadors program.

Please visit hdgenetics.com for more information.

HD Uncut with Gina 

As a way to wrap up HD Awareness Month, let's #LightItUp4HD on social media tomorrow! Share a video or photo of you with blue and/or purple glow sticks tomorrow. Make sure to use #LightItUp4HDandJHD and/or #2024LightItUp4HD. If you want, also share why you're lighting it up for HD/JHD.

Thom Hart is the Director of Outreach with the Critical Path Institute (C-Path), which is a nonprofit created by the FDA to "improve the drug development process. It operates as a neutral third party to enable scientists from the regulated industry and international regulatory agencies to work together with scientists from academia and patient groups to improve the drug development process. (Wikipedia)"  You can visit their website here: https://c-path.org/ If you are interested in contacting Thom directly, please reach out to Lauren Holder at lauren@help4hd.org, and she will connect you.

I recently attended the World Orphan Drug Congress in Boston, MA. The audio for this episode is from my YouTube video that you can find here: Dying to Live

Meredith Patterson is a performing artist, author, and producer whose family was impacted by Huntington's Disease. To learn more about her, please visit her website: https://meredithpatterson.com/ She also has a podcast called "Confessions of an Actress". This week on her podcast, she shared about Huntington's Disease as a way to raise awareness. You can check out the episode here: https://podcasts.apple.com/us/podcast/confessions-of-an-actress/id1456371818?i=1000652286159

Piere Rodriguez-Aliaga, PhD, is a young investigator whose current HD research is funded by the Hereditary Disease Foundation. He is using a new Nobel Prize-winning technology called Optical Tweezers to study one huntingtin molecule at a time, which allows access to structural information about pathogenic and non-pathogenic huntingtin variants with unprecedented detail. Please visit the Hereditary Disease Foundation website for more information.

Jennifer Petrillo Billet PhD is an Executive Director and Program Lead for investigational dalzanemdor, or SAGE-718, at Sage Therapeutics. She is responsible for driving the global development strategy, including delivery of the right evidence for key stakeholders including regulators, payers, and providers, and patients. Dalzanemdor is being evaluated for indications in Huntington's Disease, Alzheimer's Disease, and Cognitive Impairment in Parkinson's Disease. Jennifer has 20 years of deep expertise in the measurement science of Clinical Outcomes Assessments (COAs) and significant experience in all phases of drug development. Jennifer received her Bachelors in Economics at Virginia Tech, and her PhD from the London School of Hygiene and Tropical Medicine (LSHTM). She has published and presented extensively on health economics and outcomes research topics, and clinical research, across a range of leading journals and conferences.

Please visit the Factor-H website for more information. Please also tune in to the Factor-H YouTube Channel on Saturday 3/23/2024 at 12 pm EST for HD Gratitude Day events in Venezuela.

HDYO Ambassadors Series: Ep 1. with Robyn

Happy 1st anniversary of the #HDUncut Series on #Help4HDLive! This show is exactly why I came up with the series in the first place. John Howard has Huntington's Disease. He's also a very talented poet. On this show, he shares some new poetry with the HD Community.

Happy Valentine's Day! Join Erika Boulavsky from HD Reach and Lauren Holder from Help 4 HD in their conversations with Dave and Susie Hodgson about their Layers of Love. Dave and Susie's unique story talks about caring for both of their spouses with HD, how they found each other, and how they continue to support one another while caring for their kids with HD. To watch more webinars from the "Rare Topics for a Rare Disease" Series, please visit HD Reach's website here.

Host, Kevin Jess, talks about Rare Disease Day which is just around the corner

Please visit the Hereditary Disease Foundation website to find out more information.

If you'd like to follow Charlotte on social media, please visit her website: https://linktr.ee/thehdhun Instagram handle - @thehdhun TikTok - Click Here

HD Uncut, Ep. 11, with Dina De Sousa

Jamie L. Hamilton, PhD, is the Director of Clinical Outcome Assessments at CHDI. She led the HD Charge study, which focused on the indirect costs associated with being affected by Huntington's Disease. 

HD Uncut, Ep. 10 with Leah

If you'd like to follow Christy on social media, you can find her here:  Facebook - www.facebook.com/ChristyDearien Instagram - @christydearien

Kevin Jess talks about recent papers published and about to be published concerning changing the diagnostic criteria for HD

If you would like to send your resources and tips and tricks to Anna for our new database, please go to the Help 4 HD website - www.help4hd.org - go to Contact Us and submit. Anna is regularly checking submissions through the website. You can also send it directly to her email at anna@help4hd.org 

Coping During the Holidays with Melissa W.

If you'd like to learn more about HD-CAB, including how to become a member, please visit the website here. You can also contact Jenna Heilman at jenna@hdyo.org. 

Rita Gandhy is a movement disorders neurologist and comes with over 4 years of experience at Roche/Genentech. Prior to her current work in USMA, Rita led the Study Review Team for a planned tominersen study in late onset Huntington's Disease, being responsible for developing the protocol and study set up. Before USMA, Rita was in the Product Development OMNI LEAD safety group as Safety Medical Director leading the safety strategy for the initiation and execution of a number of therapeutic areas including the anti-tau molecule semorinemab. Rita obtained her undergraduate degree in theology and biology from University of Rochester, and her Medical Degree at Southern Illinois University School of Medicine. She completed her internship at Illinois Advocate Masonic hospital in Chicago, a year of Physical Medicine and Rehabilitation at Stanford and neurology residency at the University of California, San Diego. She has an additional neurology subspecialty training in movement disorders from Georgetown University. She subsequently practiced clinical neurology, as the Director of the Movement Disorder program at Marshall University in Huntington, West Virginia. There she developed a comprehensive movement program including Deep Brain Stimulation and other treatment modalities including comprehensive inpatient and outpatient care for Parkinson's disease and Huntington's disease patients. To find out if you can join the clinical trial, or for more information, please speak to your  doctor today or contact the Genentech Trial Information Support Line  (TISL) at 888-662-6728 (Monday - Friday, 5am - 5pm PT). Or https://clinicaltrials.gov/ trial #NCT05686551

Chris Brown joins me to talk about the age of onset in HD

If you'd like to join Kayla's Facebook group, please click here.

Harsh Judgment Interviewing a couple who raised two children with Huntington's disease (HD) on my program, they relayed a heartbreaking story where they stood before a judge who clearly didn't understand the nature of HD. After repeated arrests for shoplifting, violent behavior, and other issues, the judge commented from the bench that she felt this resulted from “bad parenting.” Unable to address the court or defend themselves, the couple shared, “We had to take it on the chin.” A five-minute search or phone call by the judge would have provided a bigger picture of the nature of this horrific disease that brutalizes both patients and their caregivers. Sadly, the judge chose to go with an uninformed decision—and a regrettable lack of compassion. While the judge's comments remain grievous, how many caregivers “don the black robe” and make harsh and ill-informed pronouncements upon themselves while looking in the mirror?  Countless caregivers spend way too much time condemning themselves for the out-of-control behavior of someone else.  Whatever we wish that judge to have said to this broken and despairing couple, we would benefit from posting that same message on our bathroom mirrors. I have always found that mercy bears richer fruits than strict justice. —Abraham Lincoln

HD Uncut, Ep. 5 - Erika and Olivia

This project was inspired by increasing evidence that bugs inhabiting the gut influence brain function and dysfunction, and that the gut microbial community is abnormal in mice and people with Huntington's disease. It has also been shown that the imbalanced gut bacterial profile observed in individuals carrying the HD gene is associated with lower cognitive performance and poorer clinical outcomes. In HD mice, Dr. Hannan's lab recently showed that this phenomenon appears even before motor symptoms. However, they do not yet fully understand the mechanisms mediating this imbalance nor do they know whether an intervention that returns the community of bugs towards a normal profile might be therapeutic. This project will address these important questions in HD mice by using environmental, microbial and pharmacological interventions targeting the gut microbial imbalance and hopefully ameliorating brain dysfunction. This project may facilitate future development of new treatments for people with HD.

Please visit the HD Reach website for more webinars with me and Erika.

HD Uncut, Ep. 4 with Chris Brown

Charlene Smith bio: "I am a project scientist in the lab of Dr Leslie Thompson at UC Irvine. I have worked here for 8 years studying Huntington's disease using HD patient derived stem cells. During that time I have received funding from the Hereditary Disease Foundation and the Huntington's Disease Society of America. I graduated in 2015 with my PhD from Cardiff University and wanted to pursue research in Huntington's disease." Gong-Her Wu bio: "In 2015, I proudly earned my Ph.D. from Tsing Hua University, marking a significant milestone in my academic journey. Subsequently, I had the privilege of joining the esteemed lab of Dr. Wah Chiu, where I expanded my expertise further and contributed to cutting-edge research. From 2019 to 2023, I was fortunate to receive support from the Hereditary Disease Foundation (HDF), a valuable recognition of my work's importance and potential impact. Now, I am a research scientist at Stanford University, working in the esteemed lab of Dr. Wah Chiu. Over the past six years, my focus has been on advancing the field of cryo-electron tomography (cryo-ET) and its application in studying Huntington's disease. I have employed various model systems to achieve this, including yeast, induced pluripotent stem cells (iPSCs), primary neurons, C. elegans, and mouse brains." Link to research: https://www.nature.com/articles/s41467-023-36096-w Link to Hereditary Disease Foundation: https://www.hdfoundation.org/