Huntington’s Disease Awareness Month dedicates every May to shining a light on this devastating genetic disorder. It’s a time for concentrated global effort to educate the public, break down stigma, and support individuals and families impacted by H.D. Join the movement by sharing information, participating in fundraisers, and advocating for research.
Want to sponsor Huntington's Disease Awareness Month? Learn how
Expected Huntington's Disease Awareness Month Deals
Throughout Huntington’s Disease Awareness Month, the focus shifts from commercial deals to crucial fundraising and advocacy efforts. Organizations like the Huntington’s Disease Society of America (HDSA) often partner with corporations for donation matching campaigns, encouraging contributions to research and patient support services. Look for special events, virtual walks, and online auctions hosted by local chapters and advocacy groups. Many pharmaceutical companies engaged in HD research, such as Roche and Teva Pharmaceutical, may highlight their ongoing clinical trials and educational resources. Retailers might offer branded merchandise with proceeds benefiting HD charities. We encourage everyone to visit the official HDSA website to find verified ways to contribute and participate in May’s awareness initiatives.
Platform Guide for Huntington's Disease Awareness Month
Tag @nationaltoday_ and use #HDAwarenessMonth. Share personal stories, photos of landmarks lit in blue and purple, or educational infographics to spread awareness.
X/Twitter
Mention @NatlToday and use #HDAwarenessMonth. Participate in live chats, share breaking news on research, and amplify calls to action for advocacy.
Mention National Today (facebook.com/nationaltoday) and use #HDAwarenessMonth. Join community groups, share fundraising event details, and post videos from affected families.
Huntington's Disease Awareness Month Hero
George Huntington
History of Huntington's Disease Awareness Month
Huntington Disease Awareness Month in May is sponsored by the Huntington’s Disease Society of America. It is a nonprofit organization and the world’s leader in improving the lives of people living with H.D. Through community services, education, advocacy, and research, they provide help and bring hope to people with H.D. and their families.
Initiated by the Huntington’s Society of Canada, over the years, May has become an international Huntington’s Disease Awareness Month. Huntington’s disease is a rare, progressive, inherited brain disorder that causes uncontrolled movements like jerking or twitching, emotional problems, and loss of thinking ability (cognition). The disease causes brain cells called neurons to die in various areas of the brain, including those that help to control voluntary and intentional movement. The disease is named after George Huntington, who described it among residents of East Hampton, Long Island in 1872. In 1993, a collaborative group of investigators discovered the gene that causes H.D. With this discovery, it is now possible to diagnose H.D. with blood or tissue samples.
While some people are born with the mutated gene for H.D., in most cases, they will not develop the symptoms until later in life. Therefore, someone can be without H.D. or pre-symptomatic for several years. The initial signs of this disorder may be subtle. It is characterized by a movement disorder, dementia and psychiatric disturbances, personality changes, weight loss, difficulty swallowing and hard-to-understand speech are additional characteristics of H.D.
One of the initial ways to raise awareness for Huntington’s Disease was the #LightItUp4HD Campaign, where landmarks and monuments across Canada were lit in blue and purple. Blue for H.D. and purple for Juvenile H.D. Huntington Disease Awareness Month is a time to raise awareness of Huntington’s with the wider public.
Huntington's Disease Awareness Month timeline
May 15 is International Huntington Disease Awareness Day.
A collaborative group of investigators discovers the gene that causes H.D.
In May 2017, Pope Francis meets 2,000 people impacted by Huntington’s disease in the Vatican.
The European Huntington Association kicks off Awareness Month with H.D. on the Bike, where several bikers come out to bike for H.D.
How Businesses Can Celebrate Huntington's Disease Awareness Month
Local businesses can honor Huntington’s Disease Awareness Month by organizing fundraising events or dedicating a portion of May’s sales to an HD research foundation. Consider lighting your storefront in blue and purple, or displaying educational materials about the disease. Restaurants could offer a special ‘Awareness Dish’ with proceeds going to a local HD support group. Companies can also host internal educational sessions for employees, fostering a more inclusive and informed workplace. Partnering with the Huntington’s Disease Society of America (HDSA) for a donation match campaign can amplify impact.
Huntington's Disease Awareness Month FAQs
When is Huntington's Disease Awareness Month?
In 2027, Huntington’s Disease Awareness Month will again be observed throughout May, focusing on global efforts to raise visibility and accelerate research for a cure.
How many people are affected by Huntington's Disease?
Globally, Huntington’s Disease affects about 1 in 10,000 to 1 in 20,000 people. In the U.S. alone, roughly 30,000 individuals are diagnosed, underscoring the critical need for continued awareness and support.
What are the common symptoms of Huntington's Disease?
The progressive nature of Huntington’s Disease means symptoms worsen over time, often starting with subtle changes. Early signs may involve mood swings or minor coordination issues, evolving into more pronounced motor difficulties, cognitive decline, and significant psychiatric challenges.
What is the significance of blue and purple for Huntington's Disease Awareness?
The choice of blue and purple for Huntington’s Disease awareness serves as a visual symbol of solidarity and hope. These colors are used to light up buildings and monuments globally, drawing attention to the cause and differentiating between adult-onset HD (blue) and the particularly challenging juvenile form (purple).
How to Observe Huntington's Disease Awareness Month
Fill your social media feeds with blue and purple
Observe this awareness month by sharing posts about it on social media. Post photos of yourself or your pets sporting blue or purple or nature scenes featuring blue and purple.
Take hikes
Join in walks and hikes in support of H.D. patients all over the world. You can also tell us who you are walking for and where you are walking.
Light up your home
Light up your environment and home with purple and blue lights to raise awareness for Huntington's Disease Awareness Month and support H.D. patients from all over the world. Let everyone in your neighborhood know about H.D. through your lights.
5 FACTS ABOUT HUNTINGTON’S DISEASE
It is a very rare disorder
Huntington’s disease affects three to seven per every 100,000 people of European ancestry.
It is hereditary
Every child of a parent with H.D. has a 50/50 chance of carrying the faulty gene.
The H.D.S.A vs. #LetsTalkAboutH.D.
The Huntington’s Disease Society of Nigeria held the #LetsTalkAboutH.D. campaign to help families share their experiences or stories with H.D. via a narrative, video, or photos on social media.
The “H.D. on the Move” story
The European Huntington Association (E.H.A) asked people to raise awareness through a May 30 Facebook event called “H.D. on the Move” in which participants go for a walk or take a bike ride together and upload photos of themselves engaging in such activities online.
You can plant a digital flower
Another Huntington’s Disease Association (HAD) initiative for awareness is planting a digital flower for Huntington’s disease and letting friends and family know.
Why Huntington's Disease Awareness Month is Important
It is a time to show support
In May every year, people gather either physically or online to show support to people living with H.D. by telling stories or experiences with them, celebrating them by lighting up their homes with the H.D. colors, taking hikes, biking, sharing photos, videos and messages to make them feel loved.
It is a time for fundraising
The H.D.A. During the #HDHike challenge encourages supporters to participate in fundraising for people living with H.D. by organizing their own five-mile walk or individually taking at least 8,000 steps daily through May. The aim is for each participant to raise ÂŁ100.
It is a time to come together
The National Virtual Walk, held on May 29 and 30, unites community members virtually across the country for impactful support services, advocacy, and fundraising. This is an easy way for more people to be involved in raising awareness and participating as a collective.
Social Media Tips for Huntington's Disease Awareness Month
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