HDSA Northern Florida Affiliate

HDSA Northern Florida Affiliate We are the Northern Florida Affiliate of HDSA, the premier nonprofit organization dedicated to impro

HD research needs your voice. Federal policies can have a lasting impact on the future of Huntington’s disease research....
08/21/2026

HD research needs your voice.

Federal policies can have a lasting impact on the future of Huntington’s disease research. That’s why HDSA is asking advocates to contact their U.S. House Representative and urge them to co-sponsor the bipartisan Congressional Review Act resolution led by Representatives Jake Auchincloss and Brian Fitzpatrick.

Together, we can make our voices heard.

Visit: https://www.votervoice.net/mobile/HDSA/Campaigns/139090/Respond to contact your Representative and take action to support HD research. 💙

The energy. The connection. The moments we’ll never forget. 💙 Relive the highlights from the Huntington’s Disease Societ...
08/18/2026

The energy. The connection. The moments we’ll never forget. 💙

Relive the highlights from the Huntington’s Disease Society of America’s 41st Annual Convention, held June 25–27, 2026, in Phoenix, Arizona! For three unforgettable days, the HD community came together from across the country to learn, connect, celebrate, and look toward the future. From exciting research updates and powerful educational sessions to inspiring stories, new friendships, celebrations, and plenty of memorable moments, the Convention showcased the incredible strength and spirit of our community.

Thank you to every family, advocate, volunteer, researcher, healthcare professional, speaker, sponsor, and supporter who helped make the 41st Annual HDSA Convention so special. One mission. One community. One HDSA. And the journey continues… We’ll see you in Philadelphia for the 42nd Annual HDSA Convention in 2027! Learn more at HDSA.org.

Visit: https://youtu.be/Z7RawwDmC_s?si=CaNam-4ynxXN5_E0 to watch the full video.

In Part 2 of Grey Area, the HDSA Podcast team continues the conversation with researchers Chris Kay, PhD, and Jessica Da...
08/14/2026

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.

Visit: https://www.buzzsprout.com/2092862/episodes/19632894 to listen to the full episode!

New treatments for Huntington's disease are being tested around the world, but we still lack objective, sensitive ways t...
07/31/2026

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 emot...
07/31/2026

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 se...
07/29/2026

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.

At the 41st HDSA Annual Convention, a representative from uniQure provided an important update on AMT-130, an investigat...
07/28/2026

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 t...
07/27/2026

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 Conventio...
07/23/2026

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

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10018

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Friday 9am - 5pm
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