HDSA Indiana Chapter

New treatments for Huntington's disease are being tested around the world, but we still lack objective, sensitive ways to measure whether they're working.

This talk introduces how wearable sensors, worn at home during everyday life, can capture changes in movement like walking and chorea. We will share updates on the FDA-funded MEND-HD study, including how these digital measures are being validated as clinical trial endpoints, and why making sure they reflect the symptoms that matter most to people living with HD is central to getting better treatments approved faster.

To watch the full webinar, visit: https://www.youtube.com/watch?si=OJyKVBta_CQ-Fr3f&v=l14ClVDJHGQ&feature=youtu.be

Caring for someone impacted by Huntington’s disease can be meaningful, but it can also be physically, mentally, and emotionally demanding.

Recorded at the HDSA Annual Convention, this session explores the unique challenges caregivers may face and provides practical strategies for managing stress, setting boundaries, asking for help, and prioritizing personal well-being. Attendees will also learn about resources and support available to help caregivers feel less isolated and more empowered throughout the HD journey.

Whether you are a spouse, parent, family member, friend, or professional caregiver, this session offers guidance and encouragement to help you care for yourself while caring for someone you love.

Learn more about HDSA’s programs, services, and caregiver resources at HDSA.org, and watch the full video at: https://youtu.be/XW-K4fqUPGs

What are CAG repeats, and why are they important in Huntington’s disease?

Recorded at the HDSA Annual Convention, this session breaks down the science behind CAG repeats in clear, easy-to-understand terms. Learn how CAG repeat length relates to Huntington’s disease, what it may—and may not—tell us about symptoms and disease progression, and why CAGs continue to be an important focus of HD research.

Whether you are newly diagnosed, at risk, a caregiver, or simply interested in learning more about the genetics of HD, this session offers valuable information to help you better understand the ABCs of CAGs.

Visit: https://youtu.be/OXsLDsk-Bb8 to watch the full video.

Learn more about Huntington’s disease and HDSA’s programs and resources at HDSA.org.

Did you hear the news?! Next years convention will be held in Philadelphia, Pennsylvania! We hope to see you there, counting down the days already 💜💙

At the 41st HDSA Annual Convention, a representative from uniQure provided an important update on AMT-130, an investigational gene therapy for Huntington’s disease.

This session offered the HD community the opportunity to hear directly from uniQure about recent clinical and regulatory updates, including the ongoing development of AMT-130 and what these milestones may mean for families impacted by Huntington’s disease.

HDSA is grateful to uniQure for joining us at Convention and for their continued commitment to advancing research for the HD community.

To watch the full video, visit: https://youtu.be/2oWYijsRapg

New treatments for Huntington's disease are being tested around the world, but we still lack objective, sensitive ways to measure whether they're working. This talk introduces how wearable sensors, worn at home during everyday life, can capture changes in movement like walking and chorea. We will share updates on the FDA-funded MEND-HD study, including how these digital measures are being validated as clinical trial endpoints, and why making sure they reflect the symptoms that matter most to people living with HD is central to getting better treatments approved faster.

To watch the full webinar, visit: https://www.youtube.com/watch?si=OJyKVBta_CQ-Fr3f&v=l14ClVDJHGQ&feature=youtu.be

New to Huntington’s disease? You don’t have to navigate this journey alone. 💙💚

Recorded at the 41st Annual HDSA Convention, the “New to HD” session offers information, guidance, and resources for individuals and families beginning their HD journey.

Watch now: https://youtu.be/XdQRyorPkXU