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The HDSA Podcast: Daily Summaries Delivered
by Huntington's Disease Society of America
The HDSA Podcast gives listeners an opportunity to meet members of the Huntington's disease community and get a behind-the-scenes look at the Huntington's Disease Society of America.
Latest Episodes
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- 3 weeks ago40 min
S4:E10 Let’s Talk About Life Insurance Planning and HD
Send us Fan Mail Planning for the future can bring up important questions for individuals and families impacted by Huntington’s disease. In this episode, Tam and Allison speak with Davan Johnson about life insurance planning and HD, exploring considerations that can help families approach the process with greater understanding and confidence. Join us for a thoughtful conversation about protecting loved ones and planning for tomorrow. Don't forget to follow us on social media!
- Oct 1, 202638 min
Let’s Talk About the BLA Update: What It Means for the HD Community
Send us Fan Mail Join Tam, Allison, and Maryann for a conversation about the Biologics License Application (BLA) update and what it means for the Huntington’s disease community. Together, they break down the terminology, discuss questions on the minds of individuals and families impacted by HD, and offer perspective on navigating hope and uncertainty as the community follows the path toward potential new treatments. Don't forget to follow us on social media!
- Sep 14, 202647 min
S4:E8 Let's Talk About Medical Advocacy
Send us Fan Mail In this episode of the HDSA Podcast, we sit down with Dr. Kae Bendixen to discuss the importance of medical advocacy and how individuals and families impacted by Huntington’s disease can play an active role in their healthcare. The conversation explores how to prepare for medical appointments, communicate effectively with healthcare providers, ask the right questions, and ensure that your concerns, needs, and goals are heard. Dr. Bendixen also shares practical guidance for na...
- Aug 18, 202643 min
S4:E7 Let's Talk about IVF and PGDIVF
Send us Fan Mail In this episode of the HDSA Podcast, hosts Tam, MaryAnn, and Allison are joined by special guest Emily Patterson for an open and informative conversation about in vitro fertilization (IVF) and preimplantation genetic testing/Diagnosis (PGD) for families impacted by Huntington’s disease. Emily shares her perspective and experience while the group explores what the IVF and PGD process can look like, why individuals and couples may consider these options, and some of the emotion...
- Aug 14, 202617 min
S4:E6 Let's Talk About the Grey Area : Part 2
Send us Fan Mail In Part 2 of Grey Area, the HDSA Podcast team continues the conversation with researchers Chris Kay, PhD, and Jessica Dawson, PhD, diving even deeper into the complexities of Huntington’s disease genetics. The conversation explores why HD may be diagnosed more often today, what researchers are learning about loss-of-interruption variants, and why a CAG repeat number may not always tell the full story. Chris and Jessica also explain the limitations of current diagnostic testin...
- Aug 11, 202631 min
Let's Talk About the Grey Area: Part 1
Send us Fan Mail What happens when a Huntington’s disease genetic test result doesn’t look the way you expect? In Part 1 of Grey Area, the HDSA Podcast team is joined by researchers Chris Kay, PhD, and Jessica Dawson, PhD, to explore the complexities of HD genetics. Using a Reddit post as the starting point, the group breaks down CAG repeat lengths, intermediate alleles, reduced penetrance, inheritance, and why genetic test results aren’t always as straightforward as they may seem. Join Tam, ...
- Jul 10, 202647 min
Tell Allison What She Missed at the HDSA Annual Convention
Send us Fan Mail Allison couldn’t make it to Convention, so Tam and Maryann are filling her in on everything she missed! From powerful sessions and community moments to key updates, inspiring stories, and behind-the-scenes highlights, this episode recaps the energy, connection, and hope that made this year’s HDSA Annual Convention so meaningful. Don't forget to follow us on social media!
- May 29, 202635 min
Let's Talk About HD Awareness Month Part 2
Send us Fan Mail In this episode of Let’s Talk About HD, hosts Tam Maiuri and MaryAnn Emerick are joined by Paul, Hannah, Rachel, Emily, Jenna, and Mariana for a meaningful conversation about Huntington’s disease, community, connection, and the experiences that shape the HD journey. Together, they share personal perspectives, reflect on the importance of support, and highlight the power of open conversation in helping families feel seen, heard, and less alone. This episode reminds us that eve...
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About The HDSA Podcast
The HDSA Podcast gives listeners an opportunity to meet members of the Huntington's disease community and get a behind-the-scenes look at the Huntington's Disease Society of America.
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