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PODCAST

The HDSA Podcast

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. A new episode will be released every month and please visit www.HDSA.org to learn more about HD and how to get involved.

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All Episodes

38:45

Let’s Talk About the BLA Update: What It Means for...

The HDSA Podcast ·

2026/10/01

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!

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47:32

S4:E8 Let's Talk About Medical Advocacy

The HDSA Podcast ·

2026/09/14

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...

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43:06

S4:E7 Let's Talk about IVF and PGDIVF

The HDSA Podcast ·

2026/08/18

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...

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17:55

S4:E6 Let's Talk About the Grey Area : Part 2

The HDSA Podcast ·

2026/08/14

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...

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31:31

S4:E5 Let's Talk About the Grey Area: Part 1

The HDSA Podcast ·

2026/08/11

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, ...

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47:20

S4:E4 - Tell Allison What She Missed at the HDSA...

The HDSA Podcast ·

2026/07/10

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!

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35:11

Let's Talk About HD Awareness Month Part 2

The HDSA Podcast ·

2026/05/29

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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27:30

Let's Talk About HD Awareness Month with Tam, Allison...

The HDSA Podcast ·

2026/05/18

Send us Fan Mail Let’s Talk About HD Awareness Month with Tam, Allison & MaryAnn In this episode of Let’s Talk About HD, we recognize Huntington’s Disease Awareness Month with a meaningful conversation featuring Tam, Allison, and MaryAnn. Together, they reflect on the importance of raising awareness, and discuss how storytelling, advocacy, and community support help shine a light on the experiences of HD families. Throughout the conversation, Tam, Allison, and MaryAnn highlight why awaren...

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27:32

Let's Talk About HD with Tam, Allison & MaryAnn

The HDSA Podcast ·

2026/04/23

Send us Fan Mail Meet the new hosts of the HDSA Podcast: Tamara Maiuri, PhD, Associate Director of Research and Patient Engagement; Allison Bartlett, Esq., Senior Manager of Disability Programs; and MaryAnn Emerick, LMSW, Senior Manager of Youth & Community Services. Together, they bring expertise, insight, and a deep commitment to the Huntington’s disease community. Don't forget to follow us on social media!

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22:07

S3:E1- Let's Talk About Volunteering with HDSA

The HDSA Podcast ·

2025/02/12

Send us a text In this insightful episode, Neekia Davis, Teresa Srajer, Beth Hoffman, and Dom Thomas dive into the importance of volunteering and how you can get involved in supporting the Huntington’s Disease Society of America (HDSA). They share personal experiences, tips for making an impact, and why volunteers are the heart of the organization. Whether you're looking for ways to give back or just curious about HDSA’s mission, this conversation is packed with inspiration and practical advi...

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24:15

S2:E5 Let's Talk about the HD ELPFDD Meeting

The HDSA Podcast ·

2024/12/02

Send us a textIn this insightful episode, Neekia Davis and Phyllis Foxworth dive deep into the highlights and critical discussions from the ELPFDD Meeting on November 13th. They break down the key takeaways, and provide an inside look at the collaborative efforts shaping the next steps.Join us as they outline action plans, share community feedback, and discuss strategies for addressing the pressing challenges and opportunities identified during the meeting. Whether you attended the ELPFDD or ...

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22:30

S2:E4 - Let's Talk About POWERHD

The HDSA Podcast ·

2024/10/18

Send us a textIn today's episode, we're thrilled to take a deep dive into POWERHD with special guests Erika Boulavsky, MSW, LCSW, Community Outreach Specialist at HDReach, and MaryAnn Emerick, LMSW, Manager of Youth & Community Services at HDSA. Tune in for an insightful conversation!Don't forget to follow us on social media!

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37:52

S2E3: Phyllis Foxworth & Dr. Victor Sung

The HDSA Podcast ·

2024/06/11

Send us a Text Message. In this episode, HDSA's President & CEO Louise Vetter is joined by Phyllis Foxworth and Dr. Victor Sung to chat about the changing landscape of research. Phyllis is the Senior Manager, Advocacy at HDSADr. Sung is the Director of the HDSA Center of Excellence at The University of Birmingham, Alabama, and the former chair of the HDSA Board of Directors. To learn more about Huntington's disease, please visit HDSA.org. Don't forget to follow ...

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39:11

S2E2: Leora Fox, PhD & Kelly Andrew Part 2

The HDSA Podcast ·

2024/05/08

In this episode, HDSA's President & CEO Louise Vetter is joined by Leora Fox, PhD and Kelly Andrew to chat about Somatic Instability and how to get involved in research opportunities.Leora is the Assistant Director of Research and Patient Engagement at HDSA.Kelly is the Coordinator of Research and Mission Programs at HDSA. To learn more about Huntington's disease, please visit HDSA.org. Don't forget to follow us on social media!

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42:18

S2E1: Leora Fox, PhD & Kelly Andrew

The HDSA Podcast ·

2024/04/18

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49:23

Episode #3: Maryann Emerick, Dr. Jim Gusella and Dr....

The HDSA Podcast ·

2023/03/30

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53:31

Episode #2: Chris Cosentino & Robi Blumenstein

The HDSA Podcast ·

2023/02/28

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38:06

Episode #1: Arik Johnson & Teresa Srajer

The HDSA Podcast ·

2023/01/26

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18 results

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