An alliance of Huntington’s disease (HD) organizations in the U.K. is calling for patient contributions to a project that intends to show the world what it’s like to live with the neurodegenerative disorder.
Through the end of May, the “living history” project is collecting photos, poems, or other works to help build better awareness and understanding of Huntington’s.
The contributions will be used to create a digital space for the Huntington’s community to explain the affect of the disease on patients and their families. The website will launch in May, which is Huntington’s Awareness Month.
With support from Roche, the awareness campaign was organized by the newly formed Huntington’s Disease Alliance UK and Ireland, which is comprised of the Huntington’s Disease Association, Scottish Huntington’s Association, Huntington’s Disease Association of Ireland, and Huntington’s Disease Association Northern Ireland.
“Huntington’s Disease Awareness Month is a time to raise awareness of Huntington’s with the wider public,” the Huntington’s Disease Association states in a press release. “But it is also a time for us as a community to come together, to reflect, and to show our support for each other. We want to acknowledge the unique impact of Huntington’s disease and help the public understand the challenges that people face. Importantly, we also want to celebrate the strength of those facing Huntington’s disease.”
Ideas for “snapshot stories” include a poem, original or otherwise; a selfie with family or support-team members; an inspirational or motivational quote; a drawing or other artwork; a personal message; a picture of something that reminds one of family or their support team; a book quote that relates to strength; a new or old family photo; an image of feet or handprints; portions of a note or letter; or an anonymous message of support.
Project participants may contribute as an individual or family. No narratives or short stories are permitted, however, and contributors may participate anonymously. Where possible, put the poem or any text in the email’s body rather than attach it. Include a caption of no more than 20 words that will accompany the contribution.
Huntington’s disease occurs in some 2.7 of every 100,000 individuals globally, and 10 per 100,000 in Europe. It is characterized by uncontrolled jerking and writhing movements, loss of thinking ability, and psychiatric problems.
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