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May

Huntington's Disease Awareness Month – May 2022

Huntington Disease Awareness Month is celebrated in May every year. Huntington’s disease (H.D.) is a genetic disorder that has no cure. It causes a progressive breakdown of nerve cells in the brain leading to the deterioration of a person’s physical, mental, and emotional abilities. Every month is an important time to raise awareness about Huntington’s disease but each May, there is a focus and concentrated effort to educate people, break down stigma, support and bring hope to people with H.D. and their families. During May, buildings, monuments, and statues are usually lit up in blue and purple, blue to raise awareness of Huntington’s disease, and purple for juvenile Huntington’s. Patients, caregivers, families, and friends nationwide are organizing fundraisers, planting virtual flowers, lighting landmarks blue and purple, taking hikes, flooding social media, and sharing stories about H.D. It is all intended to heighten awareness among the general public and draw the attention of policymakers, public authorities, scientists, health professionals, and industry representatives.

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

1992
Observation Day

May 15 is International Huntington Disease Awareness Day.

1993
Gene Discovery

A collaborative group of investigators discovers the gene that causes H.D.

2017
Pope Versus H.D.

In May 2017, Pope Francis meets 2,000 people impacted by Huntington’s disease in the Vatican.

2019
H.D. on the Bike

The European Huntington Association kicks off Awareness Month with H.D. on the Bike, where several bikers come out to bike for H.D.

Huntington's Disease Awareness Month FAQs

Is there a national awareness day for Huntington’s disease?

Yes, there is. May 15 is the International Huntington’s Disease Awareness Day.

What color represents Huntington’s disease?

Blue. Blue awareness is used during Huntington’s Disease Awareness. Purple represents Juvenile Huntington.

What is the life expectancy if you have Huntington’s Disease?

After being diagnosed, the life expectancy of someone with Huntington’s Disease is 10 to 30 years.

How to Observe Huntington's Disease Awareness Month

  1. 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.

  2. 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.

  3. 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

  1. It is a very rare disorder

    Huntington’s disease affects three to seven per every 100,000 people of European ancestry.

  2. It is hereditary

    Every child of a parent with H.D. has a 50/50 chance of carrying the faulty gene.

  3. 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.

  4. 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.

  5. 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

  1. 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.

  2. 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 £100.

  3. 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.

Huntington's Disease Awareness Month dates

YearDateDay
2022May 1Sunday
2023May 1Monday
2024May 1Wednesday
2025May 1Thursday
2026May 1Friday
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