HDSA-Albany

01/30/2026

and how you can ask your Members of Congress to urge the FDA to allow AMT-130 to move forward to a science-driven review, with HDSA New Jersey Chapter Vice-President, Karl Miran.

Whether you are an individual living with HD, a family member, or a supporter of the HD community, you have the opportunity to voice your opinion on the two petitions calling on the FDA to honor its prior guidance and expedite review by allowing uniQure to file a Biologics License Application (BLA) for accelerated approval consideration for its investigational gene therapy, AMT-130.

Your message right now can help keep hope moving forward.

If you are a person living with HD, you can visit: https://www.votervoice.net/mobile/HDSA/Campaigns/131579/Respond

If you are a family member, you can visit: https://www.votervoice.net/mobile/HDSA/Campaigns/131580/Respond

If you are a supporter of the HD community, you can visit: https://hdsa.org/advocacyhome/TakeAction/?vvsrc=%2fCampaigns%2f131691%2fRespond

01/30/2026

Last Thursday, HDSA President & CEO Amy Gray was joined by Karl Miran (New Jersey Chapter Vice President), MaryAnn Emrick, LMSW (Senior Manager, Youth & Community Services), and Jeremy Renz (Florida Chapter advocate) as HD organizations came together to deliver two petitions calling on the FDA to honor its prior guidance and expedite review by allowing uniQure to file a Biologics License Application (BLA) for accelerated approval consideration of its investigational gene therapy, AMT-130.

Now, hear their reflections on what this moment meant—and why timely, transparent action matters for families affected by Huntington’s disease.

Our work is not done. This is just the beginning.

✅ Take action today: visit hdsa.org/takeaction to send a message to your legislators.

01/29/2026

Rare diseases often go unseen, but the people affected by them do not.

Every voice matters. Every story counts.

One Community. Many voices. Stronger Together.

Save the date and join us this Rare Disease Day!

Click the link below and save the date:
https://www.addevent.com/event/ybyqf61m8jq9

01/28/2026

Living with or caring for someone with Huntington's disease (HD) can at times feel isolating and overwhelming. But you are not alone—there’s hope in community.

Actor and comedian Will Forte is partnering with Honestly HD to share his family's HD Story of Hope. Together with his brother-in-law, Doug, who lives with HD, they share their first-hand experience with HD -- the challenges, its profound impact, and ultimately their closer family bond due to the condition.

Watch their powerful story on HonestlyHD.com – a hub for information, inspiration and tools to help with HD, including chorea, one of the most visible and treatable symptoms of HD.

01/23/2026

It's the last day to help us pick the next Team Hope Walk T- Shirt for 2026!

🗓️ Online voting closes today, Friday, January 23rd!

Visit: https://fs22.formsite.com/hdsa/zs5gdyk81j/index to vote for your favorite T- Shirt.

01/23/2026

Join us later Today, at 12:00 PM Eastern time for a live Webinar with HD Genetics!

This webinar will offer individuals and families affected by Huntington’s disease a clear, supportive introduction to the role of genetic testing.

This session will explain: what testing can and cannot tell you, why you may decide to test, the different testing options, how results may impact medical care, research, and future planning, the many emotions one may have, and why working with a genetic counselor is essential for informed, confident decision-making.

Join us to learn the benefits, considerations, and available resources and support to help guide your journey.

To learn more, and register, visit:
https://hdsa-org.zoom.us/webinar/register/4517683204267/WN_FM03YpXyRsysW3vDWscGyQ

01/23/2026

01/22/2026

Spots are filling up for our 4th Annual Driving For Dollars event. Get your squad together to help benefit the HDSA-Albany. We are always advancing & raising awareness about HD. Process from this event will go to HDSA-Albany

Link to register:

https://www.elevateoc.org/drivingforedollars

01/21/2026

Join us this Friday, January 23rd for a live Webinar with HD Genetics!

This webinar will offer individuals and families affected by Huntington’s disease a clear, supportive introduction to the role of genetic testing.

This session will explain: what testing can and cannot tell you, why you may decide to test, the different testing options, how results may impact medical care, research, and future planning, the many emotions one may have, and why working with a genetic counselor is essential for informed, confident decision-making.

Join us to learn the benefits, considerations, and available resources and support to help guide your journey.

To learn more, and register, visit:
https://hdsa-org.zoom.us/webinar/register/4517683204267/WN_FM03YpXyRsysW3vDWscGyQ

01/20/2026

It's the last few days to cast your vote!

Help us pick the next Team Hope Walk T- Shirt for 2026!

🗓️ Online voting is open until this Friday, January 23rd!

Visit: https://fs22.formsite.com/hdsa/zs5gdyk81j/index to vote for your favorite T- Shirt.