Focusing on the journey for Huntington’s Awareness Month
Celebrated each May, goal is to aid recognition, improve diagnosis, care
The emphasis of this year’s Huntington’s Disease Awareness Month, celebrated each May, is on the patient journey.
Also, International Huntington’s Disease Awareness Day is May 15.
Huntington’s disease, or HD for short, is a progressive neurodegenerative condition believed to impact 4.9 per 100,000 people globally, including some 41,000 U.S. residents. While each patient’s experience is different, the disease affects many aspects of day to day life, causing a range of motor, cognitive, and behavioral symptoms.
Typically, HD appears when people are in their 30s or 40s. In juvenile Huntington’s, which occurs in 5%-10% of cases, symptoms manifest before age 20.
Increased awareness is crucial to enhancing Huntington’s recognition and improving diagnosis and care, advocates say.
“From Education Days and Team Hope Walks to Celebration of Hope events, there are countless ways for individuals and families to participate and show their support,” Amy Gray, president and CEO of the Huntington’s Disease Society of America (HDSA), told Huntington’s Disease News in an emailed statement.
‘Community Spotlight’ series to feature 9 people affected by HD
Throughout the month, Huntington’s Disease News will reprise its “Huntington’s Disease Community Spotlight” series. This year, the series will feature nine people affected by HD who were invited to tell their story, said Kevin Schaefer, associate director of community content at Bionews, which publishes this website.
“The stories focus on diagnosis journeys, relationships, daily life with Huntington’s, and the power of sharing personal narratives of living with the disease,” Schaefer said. “We’re grateful for a range of contributors with different backgrounds and experiences.”
Tanita Allen, a Huntington’s Disease News columnist, was responsible for collecting the stories.
“Being part of Bionews’ monthlong HD awareness effort has been deeply meaningful to me,” Allen said. “It’s powerful to see the global HD community come together to raise awareness, share our stories, and remind the world that we are here — living, thriving, and advocating for a better future. Projects like this give us hope and amplify voices that need to be heard.”
Throughout May, HDSA chapters nationwide will present a variety of community events, educational programs, and fundraising activities to raise awareness and support those affected by HD, according to a press release from the nonprofit.
“This May, HDSA invites you to join and turn up the volume on HD by participating in one of the many HDSA events happening across the country,” the release states. “Every walk, fundraiser, and awareness event helps not only spread the word about HD but also raises vital funds to support HDSA’s mission programs, including research, advocacy, and family services.”
Chapter events, primarily Team Hope Walks and Educational Days, will start May 3 and end on the last day of the month. Other events are on tap, including:
- a pickleball tournament, on May 3, in Bluffdale, Utah
- the New England Celebration of Hope: A Jazz Brunch, on May 4, in Newton, Massachusetts
- the Intergalactic Mission to Party: A Cosmic Celebration of Hope, on May 7, in New York City
- the Fourth Annual Golf for a Cure, on May 12, in West Springfield, Massachusetts
- a Celebration of Hope Wine & Shine, on May 16, in Denver
- a Celebration of Hope Luncheon, on May 18, in Laguna Beach, California.
“Each of these events has been thoughtfully planned to raise awareness, foster community engagement, and honor those affected by HD,” Gray said.
A central HDSA campaign element is #LetsTalkAboutHD, a social media initiative that encourages families globally to share their stories about living with Huntington’s to help build a sense of community and solidarity.
Throughout the month, the HDSA will publish videos from families on its social media platforms. Supporters are asked to share the stories using the hashtag #LetsTalkAboutHD.
Advocacy groups sharing stories, raising funds this HD awareness month
In the U.K., the Huntington’s Disease Association is sharing the “invisible challenges and untold stories” submitted by patients and others impacted by Huntington’s, per a campaign webpage.
“What I wish people understood is that this is a cruel disease that doesn’t discriminate and affects every person differently,” said Daniel, a carrier of an HD-causing mutation. “The mental strain of knowing that Huntington’s will affect me is one of the biggest challenges we struggle with as a family. But I wouldn’t change knowing even though it’s changed my whole life. This gives me the opportunity to try and find a cure for my sons.”
Tony, whose wife Sally was diagnosed with Huntington’s in 2013, stated: “In the early stages I wish people wouldn’t be so quick to judge. My wife was refused service at a bar as both her gait and speech were affected.”
Across England and Wales, campaign participants are encouraged to host pop-up events to help spread awareness. The association will supply factsheets, banners, stickers, balloons, and badges, along with downloadable social media tools.
The mental strain of knowing that Huntington’s will affect me is one of the biggest challenges we struggle with as a family. But I wouldn’t change knowing even though it’s changed my whole life. This gives me the opportunity to try and find a cure for my sons.
For its part, the Huntington Society of Canada is inviting supporters to participate in the Huntington Heroes National Walk fundraiser and Light It Up 4 HD, in which landmarks globally are illuminated in blue annually to raise Huntington’s awareness.
Of 214 sites lit up last year worldwide, 56 were in Canada, according to the organization. Across provinces, more than 60 structures and buildings, including the CN Tower in Toronto, will be involved in this year’s campaign.
In Australia, Huntington’s Victoria is also asking supporters to take part in Light It Up for HD, and is hosting a “May Mingle” social event on May 22 in which attendees are asked to wear something blue for HD awareness.
Help 4 HD, which provides Huntington’s education and resources, is observing awareness month by asking community members to “speak up just a bit louder about the truths and impacts” of Huntington’s. The group is offering Swag Boxes of tools to help spread the word.
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