19 episodes

Interview series with the people working in Huntington's disease research and treatments

HD Insights Podcast Huntington Study Group

    • Science
    • 4.8, 12 Ratings

Interview series with the people working in Huntington's disease research and treatments

    Episode 19 - Katie Jackson (Help4HD)

    Episode 19 - Katie Jackson (Help4HD)

    The HD Insights Podcast sits down with Katie Jackson, President and CEO of Help4HD, a nonprofit patient advocacy organization. Having witnessed the HD lifecycle from her husband's genetic testing results, through onset and progression of symptoms, to his passing last year, Katie’s personal story is one of determination and hope that has her efforts with the organization. Her story made for a powerfully moving conversation that we are incredibly fortunate to be able to share with you. Katie also shares more about upcoming Help4HD events such as their virtual HD HIPE sessions in July and August, and the training resources they provide to aid first responders or law enforcement who may encounter someone with HD. For more information on their support services, visit www.help4hd.org.

    • 50 min
    Episode 18 - Ignacio Muñoz-Sanjuán (Venzuela today and FACTOR-H)

    Episode 18 - Ignacio Muñoz-Sanjuán (Venzuela today and FACTOR-H)

    We wrap up our 3-part series on the gene hunting project in Venezuela with insights on the current situation in Venezuela – what has or has not changed in the 25 years since for those HD families and communities – plus impact on neighboring South American countries. Dr. Ignacio Muñoz-Sanjuán, President and Founder of FACTOR-H, joins Dr. Claassen on the podcast. FACTOR-H is a not-for-profit humanitarian foundation founded in 2012 to facilitate humanitarian and medical aid to diminish the suffering of local communities affected by Huntington’s disease in Latin America. If you are interested in learning more about the work that FACTOR-H does, visit their website - https://factor-h.org 

    • 40 min
    Episode 17 - Dr. Leon Dure (Venezuela memories and Movement Disorders in young people)

    Episode 17 - Dr. Leon Dure (Venezuela memories and Movement Disorders in young people)

    Dr. Leon Dure, Professor and Director of the Division of Pediatric Neurology and William Bew White, Jr. Chair in Pediatric Neurology at the University of Alabama at Birmingham. He joins Dr. Daniel Claassen for the second in a series of conversations about the research project in Venezuela a quarter-century ago that led to the discover of the HD gene. As a pediatric neurologist, Dr. Dure brings a slightly different perspective on his Venezuela experience. Additionally, he and Dr. Claassen have a more in-depth conversation about the clinical impacts of HD on young people.

    • 35 min
    Episode 16 - Dr. Ira Shoulson (Memories of Venezuela)

    Episode 16 - Dr. Ira Shoulson (Memories of Venezuela)

    On this special episode of the HD Insights Podcast, Dr. Daniel Claassen, chief editor of the HD Insights magazine, serves as guest host in speaking with Dr. Ira Shoulson about his perspectives from the research project in Venezuela in the early 1990s that ultimately led to the discovery of the HD gene. He shares fond memories of what it was like to be part of that project led by Dr. Nancy Wexler. Dr. Shoulson has had a prominent role in HD research throughout the years. He is a co-founder of the Huntington Study Group, and was part of the team that developed the Unified Huntington’s Disease Ratings Scale, or UHDRS. This is also the first episode among others planned that takes a deeper dive into some of the disparities that impact access to quality HD care. In this instance, for the people in this area of Venezuela, the geographic and severe socio economic disparities that isolated them from the rest of the country.

    • 48 min
    Episode 15 - Dr. Lauren Byrne (UCL)

    Episode 15 - Dr. Lauren Byrne (UCL)

    HD Insights Podcast caught up with Dr. Lauren Byrne to follow up on a Platform Presentation she gave at the Huntington Study Group’s annual meeting in November on some exciting biomarker research she has been involved in. Working as a research assistant with Dr. Ed Wild, Dr. Byrne helped establish and manage a HD biofluid collection called the HD-CSF study, which has been evaluating mutant huntingtin and neurofilament light. Dr. Byrne is a Research Fellow at the Huntington’s Disease Centre within the Institute of Neurology, University College London. Her passion to fight HD comes from her personal experience being from an HD family. She recently became the 2019 winner of the prestigious HDSA Berman-Topper Postdoctoral Research fellowship, and also joined the Board of the Huntington's Disease Youth Organization (HDYO). The pre-print version of the HD-CSF study can be viewed for free by visiting the following link - https://www.medrxiv.org/content/10.1101/2020.03.31.20045260v1

    • 46 min
    Episode 14 - Dr. Bruce Compas (Stress and Families Coping with Chronic Illness)

    Episode 14 - Dr. Bruce Compas (Stress and Families Coping with Chronic Illness)

    Dr. Bruce Compas is a Professor of Pediatrics and an Investigator at Vanderbilt Kennedy Center for Research on Human Development. In November 2019, Dr. Compas gave a presentation titled “Families Coping with Illness: Implications for Huntington Disease”, that covered research into stress, coping, and resilience for families dealing with chronic illnesses. Stress can be significantly magnified for HD families and caregivers, which makes the research and science behind it all the more important to understand and be aware of. Dr. Compas joined the HD Insights Podcast to help provide a sense of connection during the current pandemic, and to share strategies related to stress that may be helpful for members of the Huntington disease community.

    • 38 min

Customer Reviews

4.8 out of 5
12 Ratings

12 Ratings

Kait_9990 ,

More relevant to academics than members of community

I hope that the first episode is not indicative of the entire show... while the interview with Dr. Claassen was enjoyable - he seems like an incredible person who I’d love to get to know! - it didn’t have much particularly interesting content to a person who is a member of an HD family. While getting to know a physician more in depth as far as hobbies like viola or golf or their academic history is pleasant, I’d be more interested in spending 30-40 minutes of my time listening to how people are addressing issues in the HD community. What issues do the HD community currently face?

Is there any difficulty getting the sample sizes needed for drug development? Is the tendency for at risk individuals to not get genetically tested a challenge for drug developers? Maybe in interview with a patient who was actually in a clinical trial.

What about the threats to the ACA and pre-existing conditions? Loopholes in GINA?

What about the topics of financial and family planning decisions for genetic positive people?

What about status updates to the Huntington’s Parity Act? Interviews with members of congress?

My father is in late stages and I have recently been through genetic testing. I want to know about issues and topics that are relevant to me. I’m not interested in hearing about physician’s personal interests or topics that would mostly only be interesting to academics.

And maybe this is supposed to be more of a podcast for researchers — if that is true, then please just indicate it as such on the podcast description. Oh, and also, focus on relevant and interesting research results.

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