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.
S4:E11 Let's talk about the AMT-130 Update
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Tam Maiuri, MaryAnn Emerick, and Allison Bartlett touch base on uniQure’s announcement that the FDA has accepted its application for AMT-130 and granted Priority Review, with a target action date of May 1, 2027. Join them for a brief conversation about this latest development for the Huntington’s disease community.
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S4:E10 Let’s Talk About Life Insurance Planning and HD
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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.
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Let’s Talk About the BLA Update: What It Means for the HD Community
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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.
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S4:E8 Let's Talk About Medical Advocacy
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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 navigating the healthcare system and building collaborative relationships with your care team.
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S4:E7 Let's Talk about IVF and PGDIVF
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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 and couples may consider these options, and some of the emotional, financial, and practical realities that can come with family planning in the HD...
S4:E6 Let's Talk About the Grey Area : Part 2
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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 testing, the role of genetic counselors and HD specialists, and ongoing research aimed at better understanding sequence variants in...
S4:E5 Let's Talk About the Grey Area: Part 1
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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, Allison, Marianne, Chris, and Jessica for a fascin...
S4:E4 - Tell Allison What She Missed at the HDSA Annual Convention
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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.
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S4:E3 - Let's Talk About HD Awareness Month Part 2
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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 every HD story matters—and that by talking about HD, we continue to build awareness, understanding, and ho...
S4:E2 - Let's Talk About HD Awareness Month with Tam, Allison & MaryAnn
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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 awareness matters, not only in May, but all year long, as HDSA continues working to provid...
S4:E1 - Let's Talk About HD with Tam, Allison & MaryAnn
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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.
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S3:E1- Let's Talk About Volunteering with HDSA
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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 advice.
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S2:E5 Let's Talk about the HD ELPFDD Meeting
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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 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...
S2:E4 - Let's Talk About POWERHD
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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!
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S2E3: Phyllis Foxworth & Dr. Victor Sung
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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 about Huntington's disease, please visit HDSA.org.
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S2E2: Leora Fox, PhD & Kelly Andrew Part 2
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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.
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S2E1: Leora Fox, PhD & Kelly Andrew
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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.
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Episode #3: Maryann Emerick, Dr. Jim Gusella and Dr. Marcy MacDonald
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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.
To learn more about Huntington's disease, please visit HDSA.org.
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Episode #2: Chris Cosentino & Robi Blumenstein
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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.
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Episode #1: Arik Johnson & Teresa Srajer
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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-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.
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