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. A new episode will be released every month and please visit www.HDSA.org to learn more about HD and how to get involved.
Episodes
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 g...
In this episode of the HDSA Podcast, hosts Tam, MaryAnn, and Allison are joined by special guest Erin Paterson 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...
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...
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 tes...
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!
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 fam...
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 familie...
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!
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&rsquo...
In 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 id...
In 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!
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 HDSA
Dr. 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 abo...
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 HD...
In 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!
In 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.
In 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 fo...
In 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-t...
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