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Description
Did you know that May 11–17 marks a special week dedicated to raising awareness about Huntington’s disease? It’s called Huntington’s Disease Awareness Week, and it's a time to learn, share, and show support for those affected by this condition. Whether you're hearing about it for the first time or already know someone living with HD, this week is for you.
History
The story of HD began in the 19th century when George Huntington, an American physician, first described the disease in 1872. He detailed its symptoms and hereditary nature, laying the groundwork for future research.
In 1967, the Huntington’s Disease Society of America (HDSA) was established by Marjorie Guthrie, wife of folk legend Woody Guthrie, who passed away from HD. The HDSA has been instrumental in supporting families, funding research, and raising awareness about the disease.
Over the years, significant advancements have been made in understanding HD. In 1993, researchers identified the gene responsible for the disease, opening doors for genetic testing and potential therapies.
In 2010, the HDSA declared May as Huntington’s Disease Awareness Month, with the second week of May designated as Huntington’s Disease Awareness Week. This initiative aims to educate the public, support those affected, and raise funds for research.
How To Celebrate
1. Wear Blue and Purple
Blue and purple are the official colors for HD awareness. Wear these colors to show your support and start conversations about the disease.
2. Participate in #LightItUp4HD
Join the global movement by lighting up your home or local landmarks in blue and purple. Share your photos on social media using the hashtag #LightItUp4HD to spread awareness.
3. Join or Organize a Fundraiser
Support research and programs for those affected by HD by participating in or organizing a fundraiser. Whether it's a walk, bake sale, or online campaign, every bit helps.
4. Share Your Story
If you or someone you know is affected by HD, consider sharing your story. Personal experiences can inspire others and raise awareness about the challenges and triumphs of living with HD.
5. Educate Yourself and Others
Take the time to learn more about HD. Share articles, videos, and resources with your friends and family to spread knowledge and understanding.
Amazing Facts
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It’s inherited: If one parent has Huntington’s disease, their child has a 50% chance of inheriting the faulty gene.
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The Disease is Described back in 1872 by Dr. George Huntington, making it one of the first genetic disorders ever identified.
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The H.D.A. is Founded in 1967 by Marjorie Guthrie, bringing massive attention and advocacy for those living with HD.
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More Discoveries are Made every year, including advancements in gene therapy and symptom management to improve patient care.
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Huntington’s Disease Awareness Month is Created to shine a bigger spotlight all May long, with the week of May 11–17 as the main event.
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It’s rare but impactful: HD affects about 3 to 7 people per 100,000 in Western countries—but its effects ripple far through families.
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