The HDSA Podcast

Hosted by Huntington's Disease Society of America

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Episodes

Latest episode

May 2026

Language

EN-US

About the show

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.

Listen to episodes

12 recent

May 29, 2026Episode 335 min

Let's Talk About HD Awareness Month Part 2

Send us Fan MailIn 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 every HD story matters—and that by talking about HD, we continue to build awareness, understanding, and hope.Don't forget to follow us on social media!

May 18, 2026Episode 227 min

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

Send us Fan MailLet’s Talk About HD Awareness Month with Tam, Allison & MaryAnnIn 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 awareness matters, not only in May, but all year long, as HDSA continues working to provide help for today and hope for tomorrow for everyone impacted by Huntington’s disease.Don't forget to follow us on social media!

April 23, 2026Episode 127 min

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

Send us Fan MailMeet 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!

February 12, 2025Episode 122 min

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

Send us Fan MailIn 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 advice.Don't forget to follow us on social media!

December 2, 2024Episode 524 min

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

Send us Fan MailIn 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 are catching up on what you missed, this episode is packed with valuable insights to keep you informed and engaged in the journey ahead.Tune in to stay in the know and discover how you can contribute to the path forward!Don't forget to follow us on social media!

October 18, 2024Episode 422 min

S2:E4 - Let's Talk About POWERHD

Send us Fan MailIn 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!

June 11, 2024Episode 337 min

S2E3: Phyllis Foxworth & Dr. Victor Sung

Send us Fan Mail 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 us on social media! Don't forget to follow us on social media!

May 8, 2024Episode 239 min

S2E2: Leora Fox, PhD & Kelly Andrew Part 2

Send us Fan MailIn 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!

April 18, 2024Episode 142 min

S2E1: Leora Fox, PhD & Kelly Andrew

Send us Fan MailIn this episode HDSA's President & CEO Louise Vetter is joined by Leora Fox, PhD and Kelly Andrew.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!

March 30, 2023Episode 349 min

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

Send us Fan MailIn this episode HDSA's President & CEO Louise Vetter is joined by MaryAnn Emerick; Dr. Jim Gusella and Dr. Marcy MacDonald.Maryann is HDSA's Manager, Youth & Community Services and an HD family member.Dr. Gusella is a Professor of Neurogenetics at the Department of Genetics at Harvard Medical School.Dr. MacDonald is a Professor of Neurology at Mass General Hospital.To learn more about Huntington's disease, please visit HDSA.org. Don't forget to follow us on social media!