The month of May is designated “Huntington’s Disease Awareness Month”. The proclamation was made in 1992 by President George H.W. Bush. This is time dedicated to raising awareness about the condition, supporting families impacted by it, and promoting research towards treatment and a cure.
During this month, organizations like HD-CARE at University of California Irvine and the Huntington’s Disease Society of America (HDSA) organize events, social media campaigns, and other initiatives to educate the public and share stories of those living with the disease.
Huntington’s Disease Awareness Month:
Raising Awareness:
The primary goal is to increase public understanding of Huntington’s disease, a rare, inherited neurodegenerative disorder that causes the breakdown of nerve cells in the brain.
Supporting Families:
Awareness month provides a platform for families affected by HD to connect, share experiences, and find support from organizations and peer networks.
Advocating for Research:
Organizations use this month to advocate for increased funding and support for research aimed at finding treatments and eventually a cure for Huntington’s disease.
Events and Activities:
May is filled with various events, including educational sessions, fundraising activities, and social media campaigns like #LetsTalkAboutHD, encouraging families to share their stories.
International Collaboration:
Huntington’s Disease Awareness Month is observed internationally, with organizations like the European Huntington Association (EHA) and Huntington’s Victoria joining the effort to raise global awareness.
International Huntington’s Disease Awareness Day:
May 15th is specifically recognized as International Huntington’s Disease Awareness Day, according to the Huntington’s Disease Society of America.
How can you get involved?
Share your story:
Use social media platforms like Facebook and Instagram to share your experience with Huntington’s disease or learn more about it using the hashtag #LetsTalkAboutHD.
Speak Out:
Encourage conversations about Huntington’s disease and raise awareness about its impact on families and individuals.
Support local events:
Many organizations, like the Huntington’s Disease Society of America (HDSA), hold events throughout the month to raise awareness and funds for research, so look for local events and activities in your area.
Donate:
Consider donating to organizations like the HDSA or the Huntington’s Study Group to support research and support programs.
Learn more:
Visit the HD CARE Website
