HDSA South Region

HDSA South Region HDSA is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease and their families. Who is HDSA?

The Huntington’s Disease Society of America is the premier not-for-profit organization dedicated to improving the lives of everyone affected by Huntington’s disease and their families. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their family. The organization was f

ounded on September 18, 1967 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. Woody died from HD complications on October 3, 1967 when he was only 55 years old, but the Guthrie family legacy lives on at HDSA to this day. Across the United States, HDSA currently supports:
• More than 50 volunteer-led Chapters & Affiliates
• 50 Centers of Excellence
• 70 Social Workers
• 170 Support Groups


What is Huntington's disease? Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. Many describe the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s – simultaneously. HD Symptoms include:
• Personality changes, mood swings and depression
• Forgetfulness and impaired judgment
• Unsteady gait and involuntary movements (chorea)
• Slurred speech and difficulty in swallowing



HDSA is a 501(c)3 not-for-profit organization recognized as a charity in good standing by the IRS(EIN: 133349872) and meets all the required high Standards of Excellence of the BBB Wise Giving Alliance, Community Health Charities, National Health Council and is proud to have an A rating from the American Institute of Philanthropy.

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

Join HDSA later today, at 1:00 PM Eastern for a community webinar on how wearable sensors are shaping the future of Hunt...
07/22/2026

Join HDSA later today, at 1:00 PM Eastern for a community webinar on how wearable sensors are shaping the future of Huntington's disease clinical trials.

Learn how the FDA-funded MEND-HD study is using real-world movement data to improve how treatments are measured and help accelerate the development of new therapies.

To learn more, and register, visit: https://hdsa-org.zoom.us/webinar/register/6217839516105/WN_9D8_B5ZhRO-MxbAvrNR7XA #/registration

Join HDSA tomorrow, July 22nd at 1:00 PM for a community webinar on how wearable sensors are shaping the future of Hunti...
07/21/2026

Join HDSA tomorrow, July 22nd at 1:00 PM for a community webinar on how wearable sensors are shaping the future of Huntington's disease clinical trials.

Learn how the FDA-funded MEND-HD study is using real-world movement data to improve how treatments are measured and help accelerate the development of new therapies.

To learn more, and register, visit: https://hdsa-org.zoom.us/webinar/register/6217839516105/WN_9D8_B5ZhRO-MxbAvrNR7XA #/registration

Check out the Opening Ceremony of the 41st Annual HDSA Convention, where the Huntington’s disease community came togethe...
07/21/2026

Check out the Opening Ceremony of the 41st Annual HDSA Convention, where the Huntington’s disease community came together to connect, learn, and celebrate the strength of our shared mission.

The ceremony featured important updates from HDSA leadership, inspiring community voices, and an update on the clinical trials that take place at the HDSA Convention Together, we are moving forward as one community, united by help for today and hope for tomorrow.

To watch the full video, visit: https://www.youtube.com/watch?v=nde4OV_4f9s and to learn more about HDSA, visit HDSA.org.

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