‘Let’s Talk About’ Huntington’s Disease Awareness in May

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by Mary Chapman |

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Huntington’s Disease Awareness Month

Activities are underway worldwide to mark Huntington’s Disease Awareness Month, set aside each year to call attention to the neurodegenerative disorder that is thought to affect three to seven per every 100,000 people of European ancestry.

May 15 is International Huntington’s Disease Awareness Day.

Patients, caregivers, family, and friends nationwide are organizing fundraisers, planting virtual flowers, lighting landmarks blue and purple, taking hikes, flooding social media, and sharing stories about Huntington’s disease (HD). It all is intended to heighten awareness of the disorder among the general public, as well as to draw the attention of policymakers, public authorities, industry representatives, scientists, and health professionals.

The Huntington’s Disease Society of America (HDSA) this year is focusing on educating the world through social media about the impact of the disease on families.

“Each May, Huntington’s Disease Awareness Month gives the HD community a platform to turn up the global volume and educate more people about this devastating and rare brain disease,” said Louise Vetter, HDSA’s CEO, in an e-mailed statement to Huntington’s Disease News.

“At HDSA, we drive conversation and support with our #LetsTalkAboutHD campaign to help families share their stories, videos, and photos on social media. Additionally, we have events online and around the country for folks to take part in and directly support the fight against Huntington’s disease,” Vetter added.

The campaign #LetsTalkAboutHD is aimed at getting families to share their experiences with HD via a narrative, video, or photo. The organization has resources that include a downloadable sign, social media profile frame, and a toolkit that contains key messages, sample video scripts, social media posts, and a campaign participation request letter.

Another HDSA effort is a new sports auction called Athletes vs. HD. Participants may bid on items such as a wrestling rink turnbuckle, an autographed photo of Brooklyn Nets star Spencer Dinwiddie, a bobblehead of Buffalo Bills quarterback Josh Allen, a football autographed by University of Michigan football coach Jim Harbaugh, and more.

The auction opened Saturday and closes on HD Awareness Day May 15. Proceeds will go to the HDSA to support patient and family care, education and advocacy efforts, and to HD research.

“Every athlete knows that the team always comes first, and our team is the Huntington’s disease community,” an HDSA webpage states. “Athletes vs. HD brings our friends in the sports world together to fight Huntington’s disease.”

In addition, the HDSA is spotlighting “31 Days, 31 Stories,” an effort in which the organization offers a video of a community member talking about their connection to HD and their experiences.

“The future is tremendously, optimistically, scientifically, full of hope for a cure,” said one patient. “Live present each day, grasp every moment humbly and do not take the next breath for granted. There’s hope, there’s a cure out there.”

From another video: “From my mother’s side, her grandfather had it [HD], her mother had it, then my mom actually passed away from it in 2016. I still have family on my mom’s side who is at risk and who are currently suffering, and I tested negative a few years ago,” she said. “Community is really so powerful. For the longest time, we were scared to discuss HD but we’re raising our voices now. … It’s really humbling to hear other families’ stories and relate to issues that are caused by HD.”

Patients and other community members who don’t have access to social media, but would like to share their story, can contact Matthew Santamaria at [email protected]

Elsewhere, the Huntington Society of Canada is asking supporters to join its Light It Up 4 HD campaign, for which landmarks and monuments across Canada are lit in blue and purple this month to raise awareness of HD (blue) and juvenile HD (purple). Participants also may use blue and purple lights at home, and are encouraged to share photos of the illuminations on social media with the hashtag #LightItUp4HD.

The organization has requested that public buildings across Canada fly the Huntington Society of Canada flag for a period this month, and that local governments officially proclaim May as Huntington Disease Awareness Month.

Also, the European Huntington Association (EHA) is asking people to help raise awareness through a May 30 Facebook event called “HD on the Move,” in which participants go for a walk or take a bike ride together — online. Participants are encouraged to send photos of themselves engaging in such activities, and tag the organization.

The EHA also asks patients and caregivers to share their stories about their experience with HD and tag #HDAwarenessMonth.

In the United Kingdom, the Huntington’s Disease Alliance UK and Ireland — a coalition of the Scottish Huntington’s Association, the Huntington’s Disease Association (HDA), and the Huntington’s Disease Association Northern Ireland — have opened a “Family Matters” campaign. The effort includes a Living History project — a digital space for the HD community for sharing, through words or images, how they feel about living with Huntington’s.

The campaign will include a stout media presence, celebrity ambassadors, the creation of videos that feature interviews with HD families, surveys for gaining key community data, conversations with decision-makers, and a campaign website.

The HDA also is asking supporters to get involved by taking on a hiking challenge called #HDHike to help support the 8,000 people living with HD across the U.K. The fundraising effort asks participants to organize their own 8-kilometer walk, or to individually take at least 8,000 steps daily through May. The aim is for each participant to raise £100 ($139).

Another HDA initiative for awareness month involves planting a digital flower for Huntington’s disease and letting friends and family know. “You can remember a loved one affected by Huntington’s and help bring the disease out of the shadows, the organization’s webpage states. “You can leave a message to show why you’re supporting Huntington’s Disease Awareness Month.”