The HDSA Podcast

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!

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!

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!

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!

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!

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!

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!

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!

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!

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!

Send us Fan MailIn Episode #2, Louise Vetter is joined by Chris Cosentino & Robi Blumenstein. Chris Cosentino is HDSA's Director of Marketing & Communications and has been with the Society since 2014. Robi Blumenstein is President of CHDI and in 2002 organized CHDI Management to provide management services to non-profit organizations engaged in Huntington’s disease research.Don't forget to follow us on social media!

Send us Fan MailIn this episode HDSA's President & CEO Louise Vetter is joined by Arik Johnson, PsyD and Teresa Srajer. They discuss the launch of the new HDSA Podcast, the 38th Annual HDSA Convention and a behind-the-scenes look at the Huntington's Disease Society of America. Dr. Johnson is HDSA's Chief Mission Officer and former Chair of HDSA's Board of Trustees. Teresa is an HD family member, long-time volunteer and HDSA's newly appointed Chair of HDSA's Board of Trustees. To learn more about Huntington's disease, please visit HDSA.org. Don't forget to follow us on social media!