HDSA 2025: Community gathers for 40th annual convention
Sold-out event includes streamed sessions for live viewing
Today kicks off the 40th annual convention of the Huntington’s Disease Society of America (HDSA), an event the association says provides an opportunity for the Huntington’s disease community to come together to “learn, share, and build hope for the future.”
This year’s convention is taking place in Indianapolis. The in-person event is sold out, but some sessions can be attended via livestream on the event’s website or through the convention app. Recorded workshops will be available after the event.
The conference is “like a big family reunion,” Jessica Marsolek, associate director of community services for the HDSA, said in a written Q&A with Carlos Briceño, a columnist at Huntington’s Disease News whose wife and daughter are positive for a Huntington’s-causing mutation.
“Our main goal at the convention is to create a space where those impacted by [Huntington’s] can feel safe to be who they are, to be surrounded by a large community of people who ‘get it’ and care about them,” Marsolek said, noting that the conference will feature activities for people of all ages and opportunities to connect with others in the Huntington’s community.
Sessions offer tips on insurance, clinical trials, advocacy
The convention’s doors open with registration at 1 p.m. EDT today. There will be an orientation for first-time attendees at 4 p.m. EDT, followed by regional meet-and-greets for people from different parts of the U.S. to come together.
Then at 6:15 p.m. EDT is the Team Hope Walk, a family-friendly event where the community will come together to raise support and awareness. The first day will be capped off with a welcome reception from 7-9 p.m. EDT.
The convention’s second day will start with breakfast at 7:30 a.m. EDT, followed by an opening ceremony at 8:30 a.m. EDT. A series of talks begins at 9 a.m. EDT, with topics ranging from understanding the insurance and legal nuances of genetic testing, how to manage self-care while living with Huntington’s, and tips for advocating at a federal level.
After a short break, the second day will continue with more sessions at 11 a.m. EDT. Topics covered will include updates on Huntington’s clinical trials, tips for maximizing financial security, advice for home safety, discussions about how to grow a healthy Huntington’s community, and how to deal with stigma.
An HDSA volunteer awards luncheon will take place at noon EDT, and the rest of the afternoon will feature sessions on topics including managing care needs, avoiding isolation, disability rights, and adaptive equipment.
The second day will conclude with the HDSA’s National Youth Alliance talent show at 5:30 p.m. EDT.
The final day starts with breakfast at 7:30 a.m. EDT, followed by sessions including a research forum, discussions about juvenile Huntington’s, navigating long-term care needs, dealing with grief, working with Huntington’s, handling intimacy, and tips for caregiver success.
A clinical trials showcase lunch will take place at noon EDT, after which there will be a screening of the movie, “Cracking the Code: Phil Sharp and the Biotech Revolution.” It tells the story of a Nobel laureate whose scientific discoveries paved the way for major advances in modern molecular medicine.
The convention’s two full days will offer support groups, including groups for teens, young adults, those at risk for the disease, and caregivers. An ongoing activity center will be available for much of the conference.
The conference will wrap up with an awards dinner and gala from 7 p.m. to 11:59 p.m. EDT on the final day.
An exhibit hall offering resources and information from a range of companies and organizations dedicated to Huntington’s will be open throughout the convention.
Teva Pharmaceuticals, which markets Austedo and Austedo XR (deutetrabenazine) for treating Huntington’s-associated chorea (involuntary movements), is the convention’s presenting sponsor. Other pharmaceutical companies that market Huntington’s therapies or are developing new potential treatments are also sponsors.
“We hope that attendees make connections with others — both community members and professionals who make their life better,” Marsolek said.
Note: The Huntington’s Disease News team is providing virtual coverage of the Huntington’s Disease Society of America annual convention June 26-28. Go here to see the latest stories from the conference.
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