HDSA Marks 34 Years of Huntington’s Disease Awareness Month This May
Nationwide events, community storytelling, proclamations, and landmarks lighting up in blue will help shine a light on Huntington’s disease
[New York, NY] — [May, 1, 2026] — The Huntington’s Disease Society of America (HDSA) is proud to mark 34 years of Huntington’s Disease (HD) Awareness Month this May, a nationwide initiative dedicated to educating the public, raising awareness, and supporting individuals and families impacted by Huntington’s disease.
Throughout the month, HDSA will lead and support educational programs, fundraising events, community gatherings, storytelling campaigns, and awareness activities across the country. From Team Hope Walks and Education Days to landmarks lighting up in blue, HD Awareness Month is an opportunity to bring greater visibility to a disease that too often goes unseen and misunderstood.
HD Awareness Month traces its roots to May 1992, when President George H. W. Bush issued a proclamation recognizing the importance of this cause and urging the nation to learn more about Huntington’s disease and show compassion for those affected. More than three decades later, that message continues to resonate.
“During Huntington’s Disease Awareness Month, we have an important opportunity to shine a light on a disease that too often goes unseen and misunderstood,” said Amy Gray, President & CEO of HDSA. “This community shows incredible resilience, courage, and love every day, and that strength drives our work forward. By sharing information, supporting families, attending events, and learning more, each of us can help raise awareness, strengthen support, and ensure that no one impacted by HD feels unseen or alone.”
As part of this year’s observance, HDSA is encouraging the community to participate in #LetsTalkAboutHD, a social media initiative that invites individuals and families to share their experiences with Huntington’s disease through videos, photos, or written stories. Through these shared stories, HDSA hopes to foster greater understanding, compassion, and connection.
HDSA events taking place throughout May include Team Hope Walks, Education Days, fundraising events, and community gatherings across the country.
“Awareness is a critical part of progress,” said Gray. “The more people understand Huntington’s disease, the stronger our ability becomes to support families, drive advocacy, and move research forward.”
HDSA invites the public to join HD Awareness Month by attending an event, sharing resources, participating in #LetsTalkAboutHD, wearing blue, and helping spread the word throughout May.
For a full list of events taking place throughout HD Awareness Month, please visit hdsa.org/events.
To learn more about Huntington’s disease or access support resources, visit hdsa.org.
About the Huntington’s Disease Society of America The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone impacted by Huntington’s disease and their families. HDSA provides community services, education, advocacy, and support, while accelerating research and advancing efforts to improve care and treatment options for people affected by HD.
