HDSA 2026: Leaders detail strategic priorities to improve care
Expanded care network, more access to special services among areas for focus
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Huntington’s Disease Society of America (HDSA) leaders at the group’s 41st annual convention unveiled a new strategic plan and mission statement to meet the needs of Huntington’s disease patients, including plans to expand research programs and Centers of Excellence and build a strong network to fight the disease.
“We are standing at a very important moment for HDSA and for the Huntington’s disease community,” Jenne Coler-Dark, chair of the HDSA board of trustees, said at the convention, held June 25-27 in Phoenix, with some sessions also streamed online. “We know that there is still work ahead, but we are entering an era where treatments are truly on the horizon, and that calls on HDSA to be ready,” said Coler-Dark, who learned in 2015 that she carried the Huntington’s-causing mutation.
There are no approved disease-modifying therapies for Huntington’s. Current treatment focuses on alleviating troublesome symptoms and improving quality of life.
But with research and clinical trials moving faster than ever, treatments to slow disease progression “are no longer a distant dream — they are on the horizon,” said Amy Gray, HDSA’s president and CEO.
Gray said HDSA’s ultimate vision remains the same: to achieve a world in which Huntington’s is treatable and all people with the disease have access to care. “But how we express that promise to the world has evolved to match this new chapter and this new era for our community,” she said.
New efforts follow year-long listening tour
Over the last year, the organization has gone on a listening tour to better understand the needs of the Huntington’s community, surveying hundreds of families. From this, a plan was built on three foundational pillars: expanding care and support, accelerating research and advocacy, and building a unified community.
Among HDSA’s planned efforts will be expanding its Centers of Excellence care network to ensure Huntington’s families are supported no matter where they live, building its research programs, and partnering with Congressional leaders to champion families’ needs at the federal level.
While plans like these happen in the boardroom, the real progress comes from the families who live with Huntington’s and strive every day for change, Gray said.
“Our strength as an organization and as a community lies in our collective action,” Gray said. “Every time you share your story, show up to an event, or volunteer, you push the needle forward.”
An example of that came from Swati Sathe, MD, medical vice president of clinical research for the CHDI Foundation, a nonprofit research foundation focused on developing Huntington’s therapies.
Since 2022, the foundation has had a pop-up research room at the HDSA convention where community members can anonymously contribute questionnaires, motor assessments, blood draws, and other types of data. The effort is a cost-effective way to gather many Huntington’s patients in one place, as well as an opportunity to collect pilot data that scientists can use to enhance clinical research and care.
Sathe showed examples from previous years in which data collected at the convention helped scientists validate tools such as cognitive questionnaires and disease biomarkers.
The project also provides families with the opportunity to interact directly with researchers and ask questions, Sathe said. The researchers initially thought that they would consider the research room a success if 40 participants showed up, according to Sathe, but 140 or more people have participated each year.
“I know the convention is very busy,” Sathe said. “And yet every one of you finds time to show up at our research study room and do as many sessions as you can.”
Community “is what makes this weekend so powerful,” said Coler-Dark. “It is not just about the sessions we attend or the information we learn. It’s about being together.”
Attending the convention is “like years wearing this heavy backpack that no one else can see and then arriving somewhere where everyone is carrying one too,” Coler-Dark said. “You don’t have to explain the weight; everyone already gets it.”
Jasmine Demers, president of the Arizona chapter of HDSA, echoed that sentiment. Demers directed the 42 Repeats documentary, which follows her family’s experience navigating three generations of Huntington’s, including her own positive test for the disease-causing mutation at age 25.
“When I attended my first convention in 2018, everything changed for me,” Demers said. “For the first time, I was surrounded by people who truly understood what it meant to live in an HD [Huntington’s disease] family.”
Demers said that beyond information and resources, what she found at the HDSA convention then, and has found every year since, was hope.
“Being here today reminds me that progress is real, that this community is extraordinary, and that together we are building a future that looks even brighter than it did yesterday,” she said.
Note: The Huntington’s Disease News team is providing virtual coverage of the Huntington’s Disease Society of America’s annual conference June 25-27. Go here to see the latest stories from the conference.
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