HDSA-Albany

HDSA-Albany HDSA is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease and their families.

Huntington's Disease (HD) is a devastating, hereditary, degenerative brain disorder that results in a loss of cognitive, behavioral and physical control, and for which, presently, there is no treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Symptoms usually appear in an individual between 30 and 50 years of age and progress over a 10 to 25

year period. Eventually, a person with HD becomes totally dependent upon others for his or her care. More than 30,000 people in the United States are currently diagnosed with HD and 200,000 are at-risk.. Each of their siblings and children has a 50 percent risk of developing the disease. Although medications can relieve some symptoms in certain individuals, research has yet to find a means of conquering or even slowing the deadly progression of HD.

Today, uniQure announced it has submitted a Biologics License Application, or BLA, to the FDA for AMT-130, an investigat...
09/02/2026

Today, uniQure announced it has submitted a Biologics License Application, or BLA, to the FDA for AMT-130, an investigational gene therapy for Huntington's disease. A BLA is the formal request a company files asking the FDA to review a treatment for approval. They also submitted an application to UK regulators.

This is a real milestone after a long road, and we know our community has followed every twist and turn of this program. While this application stands on promising data from a small number of people, the FDA still has to review everything carefully, and it will be some time before we know the outcome. HDSA will keep you posted as it unfolds.

Visit:https://hdsa.org/wp-content/uploads/2026/09/uniQure-Announces-Submission-of-Biologics-License-Application-for-Ifezuntirgene-Inilparvovec-AMT-130-in-Huntingtons-Disease.pdf for more information.

09/02/2026

HDSA is honoring Marjorie with the goal of helping HD families!
One of Marjorie's most important beliefs was that together we could find answers. This Founder's Day, a friend of the HDSA mission has pledged to match dollar for dollar - up to $20,000 - any donation to HDSA on Founder's Day! This means every dollar you donate on Founder's Day will have DOUBLE the impact for HD families.

Please help us achieve our goal and seize this amazing matching gift opportunity! Please join us on September 18th for a very special 24-hour day of giving dedicated to Marjorie Guthrie, her legacy, and the movement she inspired that led to the establishment of HDSA.

Add To Your Calendar:
https://www.addevent.com/event/5hnc64zml3xz
or
Give Now. Learn More:
https://give.hdsa.org/campaign/836039/donate

The HDSA Research Forum provides the Huntington’s disease community with an overview of the evolving HD research landsca...
09/01/2026

The HDSA Research Forum provides the Huntington’s disease community with an overview of the evolving HD research landscape and a closer look at the road ahead for clinical trials.

Recorded at the 41st Annual HDSA Convention in Phoenix, Arizona, this session features members of HDSA’s Clinical Trial Readiness Taskforce, who discuss the current roadmap of Huntington’s disease clinical trials, emerging opportunities in the research pipeline, and the work underway to help ensure the HD community is prepared for future studies and potential therapies.

The conversation also highlights the importance of clinical trial readiness, education, and community engagement as research continues to advance.

Visit: https://youtu.be/1gS3e9ahF3k to watch the full video.

Learn more about HDSA’s research programs, clinical trials, and resources at HDSA.org/research.

Help for Today. Hope for Tomorrow.

A member of our HDSA-Albany board is participating in the NYC Marathon to support our cause by raising funds. Huntington...
08/29/2026

A member of our HDSA-Albany board is participating in the NYC Marathon to support our cause by raising funds. Huntington's Disease is a devastating and incurable rare disorder that combines the debilitating effects of ALS, Alzheimer's, and Parkinson's, progressively eroding mental, emotional, and physical capabilities. At 18 years old, I received a diagnosis of Huntington's Disease, and since then, I have devoted myself to increasing awareness about this condition. To achieve this goal, I have engaged in various activities such as panel discussions, podcasts, educational series, and medical interviews. Additionally, I have introduced innovative fundraising initiatives, including movement months and kickball tournaments. Running a marathon, however, is a new challenge I had not previously considered. I kindly request your support in this endeavor by donating to help combat Huntington's Disease.

https://people.com/woman-diagnosed-with-huntingtons-disease-at-18-speaks-out-exclusive-11974246?fbclid=IwRlRTSAR9GZZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEefuYlfn2LCw7Fl1RFgdQLLuq6SB5VWr32y_qBUF9gJps0OOIZbCS-Ptfahbg_aem_D-2rVRoOlcn-FEziLLz2DA

Fundraising page:

https://give.hdsa.org/fundraiser/7121529

The HDSA National Youth Alliance (NYA) Talent Show is always a special Convention tradition—bringing together creativity...
08/28/2026

The HDSA National Youth Alliance (NYA) Talent Show is always a special Convention tradition—bringing together creativity, connection, and plenty of fun from across the HD community.

Recorded at the 41st Annual HDSA Convention, this event showcases the talents and personalities of members of HDSA’s National Youth Alliance while celebrating the friendships and sense of community that make the NYA so special.

From performances to memorable moments, the Talent Show is a chance for young people impacted by Huntington’s disease to come together, support one another, and shine.

Learn more about the HDSA National Youth Alliance and resources for young people impacted by Huntington’s disease at HDSA.org/nya.

Visit: https://youtu.be/WNaSWbo_6HQ to watch the full video

https://youtu.be/k97ouSmlIh4Planning for the future can feel overwhelming, but understanding available financial resourc...
08/26/2026

https://youtu.be/k97ouSmlIh4
Planning for the future can feel overwhelming, but understanding available financial resources can make a difference.

In this session from the 41st Annual HDSA Convention, learn more about AZ ABLE (Achieving a Better Life Experience) and how ABLE accounts can help eligible individuals with disabilities save for qualified expenses while maintaining access to important public benefits.

Watch now to learn how ABLE accounts may support greater financial independence and long-term planning for individuals and families impacted by Huntington’s disease.

Visit: https://youtu.be/k97ouSmlIh4 to watch the full video

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. 💙

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Castleton-on-Hudson, NY
12033

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Monday 5pm - 7pm
Tuesday 9am - 2pm
Thursday 9am - 2pm
Saturday 11am - 1pm

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