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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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