Huntington’s awareness month shines light on personal stories
Organizations encourage community involvement, support for families
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May marks Huntington’s Disease Awareness Month, and organizations worldwide are promoting greater awareness and understanding of the condition, as well as support for patients, families, and caregivers affected by it.
Huntington’s disease (HD) is a genetic disorder that causes progressive damage and death to nerve cells in the brain. Huntington’s symptoms include movement disorders, cognitive impairment, and behavioral disturbances. HD typically appears in the third and fourth decades of life, with 5%-10% of cases manifesting before age 20 (juvenile HD).
The Huntington’s Disease Society of America (HDSA) is marking 34 years of Huntington’s Disease Awareness Month with activities nationwide.
“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,” Amy Gray, HDSA’s president and CEO, told Huntington’s Disease News in an emailed statement. “Raising awareness means helping more people understand the realities faced by individuals, families, and caregivers impacted by HD, while also building greater compassion, support, and urgency for progress.”
Throughout May, HDSA chapters are hosting educational programs, Hope Walks, Education Days, and social media campaigns to raise awareness and support for those affected by HD. The association is encouraging people to share their stories through pictures, videos, or prose as part of its #LetsTalkAboutHD social media initiative.
‘This is a community of heroes’
HDSA events include a Celebration of Hope on May 6 in New York; the fifth annual Golf for a Cure on May 11 in West Springfield, Massachusetts; and a Team Hope Walk on May 30 in Tulsa, Oklahoma.
“This community shows incredible resilience, courage, and love every day, and that strength drives our work forward,” Gray said in an HDSA press release. “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.”
The U.S.-based nonprofit organization HD Reach is offering HD Awareness yard signs, matching donations, and sponsoring a Friday Night Movie Night streaming “Remarkably Bright Creatures” via Zoom on May 8.
“This is a community of heroes…of people who have found strength in adversity, who show up for each other, and who keep fighting year after year, generation after generation,” Anthony Martinez, PhD, HD Reach’s board chair, said in an emailed statement to Huntington’s Disease News. “It is this community that gives me hope – and everyone affected by HD deserves the opportunity to be part of it.”
The Huntington Society of Canada has several ways to get involved for awareness month. These include participating in the Huntington Heroes National Walk fundraiser and the Light It Up 4 HD campaign, in which structures and landmarks are lit up in blue for HD and purple for juvenile HD.
“Huntington disease does not stop, and neither do we,” Shelly Redman, HSC’s CEO, told Huntington’s Disease News in an emailed statement. “Awareness Month is about coming together as a community to drive progress, support one another, and ensure that every family facing Huntington disease knows they are not alone.”
The European Huntington Association and the International Huntington Association are teaming up on a month-long campaign with the theme “More Than HD – Be Part of It,” which culminates on May 15, International Huntington’s Disease Awareness Day.
The first phase of the campaign combines storytelling and education to give a personal look into what it means to have and live with HD. In the second phase, the associations invite participants to take actions such as volunteering. A webinar titled, “Get Involved: The power of volunteering in the HD Community,” will be held on May 7.
In the U.K., the Huntington’s Disease Association’s awareness month campaign theme, “Behind the Gene,” focuses on the disease’s invisible challenges and untold stories. The organization provides resources on hosting pop-up events, becoming an HD fact sheet distributor, sharing stories, and holding an HD walk.
The association is also highlighting a pair of webinars: “Finding your way: Awareness Month special,” on May 13, in which Becky, an HDA ambassador, will discuss how she has helped family members affected by HD, and “Huntington’s and me: family members talk about their experiences,” from the Huntington Disease Alliance “Family Voices” series, on May 20.
The Scottish Huntington’s Association is encouraging the community to “Make a Move in May.” Supporters can get involved by sharing social media posts, discussing the cause with coworkers, participating in various events, or arranging a local fundraiser. Scotland is returning to the World Cup after 28 years, and the association is celebrating by raising funds for HD.
Huntington’s Australia, meanwhile, invites the public to participate in “High Tea 4 HD” events. Participants can register their own events, fundraise, and donate directly.
