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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.

Whether you are living with HD, supporting a loved one, or serving as a caregiver, this episode offers helpful strategies for becoming a more confident and informed advocate throughout the care journey.

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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 community.

As always, the conversation is candid, compassionate, and centered on helping families better understand the choices that may be available to them.

Whether you are considering IVF and PGD, supporting someone who is, or simply want to learn more about reproductive options for families affected by Huntington’s disease, this episode offers an approachable starting point for the conversation.

This podcast is for educational purposes only and is not intended to provide medical advice. Individuals considering IVF, PGD, or other reproductive options should speak with qualified medical and genetic counseling professionals.

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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 people with reduced penetrance CAG repeats.

The group also discusses research-based testing underway through the HD Biobank at the University of British Columbia and why continued research could help improve how these complex genetic results are understood in the future.

Join Tam, Allison, Marianne, Chris, and Jessica as they continue navigating the fascinating—and sometimes unexpected—grey areas of Huntington’s disease genetics.

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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 fascinating and approachable conversation about the “grey areas” of Huntington’s disease genetics—and the questions that can send even HD researchers down a rabbit hole.

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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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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 hope.

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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 provide help for today and hope for tomorrow for everyone impacted by Huntington’s disease.

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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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