When I first tested positive for HD, I honestly thought that I was completely alone in the world. I had no idea that there were so many others out there who shared in my struggles and were willing to help.
Let me tell you, there are plenty of ways for you to get involved, and I highly suggest it. Through these amazing HD organizations, I’ve met so many people who I now consider family.
A large part of me believes that “getting involved” saved my life in more ways than one. It might just save yours, too.
“The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with Huntington’s disease and their families.”
If you visit THIS page and scroll down to the very bottom, then you can search for various resources that are near you. Here is a brief description about what the main sources provide:
- Support Groups: These are meetings that usually occur once a month at a location provided under the search results. A couple of board members lead the meetings, which discuss topics such as local events/fundraisers, health services, and ways to advocate. The support groups are always welcoming to newcomers who are affected by HD in any way, and they provide a tremendous amount of emotional support and encouragement. To find out when the next nearby meeting will be, email or call the board member listed under your search results.
- Chapters and Affiliates: This is going to be the HDSA partner closest to you. Under the search results, you will find that each chapter has their own website which provides the latest news and events that are going on closest to you.
- Centers of Excellence: It can be extremely difficult to locate a doctor who is well-educated on how to help/treat HD patients. The HDSA makes the search process much easier by providing the address of the nearest hospital to you that specializes in HD. In order to make an appointment, call or email the head doctor that is listed under your search results.
- Social Workers: This will generate a list of nearby social workers who specialize in HD. They are the people you will want to contact when in comes to testing, care-taking, disability, Medicaid/Medicare, planning for the future, or any other inquiries you have about HD.
Below is a visual guide for the rest of the search topics that the HDSA provides:
The HDSA also holds a national convention, where you can meet thousands of other people affected by HD, attend workshops and conferences, partake in HD-related activities, advocate, speak, and much more.
Here is a video from the 2016 convention:
HDSA Social Links:
“We are made up of young women and men ages 9-29 that are impacted by Huntington’s. The NYA is dedicated to our vision of being the last generation with Huntington’s disease and as an essential part of the future of HDSA; we pride ourselves on our ability to persevere throughout the years. Since 2004, NYA has grown from a small group of kids to over 500 members!
It is our mission to not only support young people within the HD community, but also inspire the youth of HDSA to get involved in the battle against HD and be proactive in this fight. We are dedicated to making ours the last generation with Huntington’s disease.”
“The NYA provides a wide variety of ways for the youth of HDSA to become motivated:
- By increasing the amount of local youth support groups nationwide we are able to ensure our members are getting the support they need locally
- Educating the youth at Education Days, Symposiums and Conferences locally as well as on the national level at NYA Day and Convention
- Advocacy training and proactive efforts from meetings with the Senate and Congress at home to Capitol Hill in Washington D.C.
- Fundraising for our NYA Convention Scholarship Fund
- Providing updates on NYA activities, initiatives, and fundraising efforts in the We Are the NYA newsletter
- Sharing the experiences and observations of young people from all walks of life affected by Huntington’s disease through our website’s Faces of NYA section.”
This year, the NYA began hosting various youth retreats at no cost. Though this year’s round of retreats have already concluded, you can stay updated HERE.
If you or someone you know would like to join the NYA, all you have to do is visit their website. Once you have joined, the NYA will provide different ways for you to advocate and get involved.
Here is a video from the 2015 convention:
NYA Social Links:
Click on the link above to help advocate for the Parity Act. Simply scroll to the very bottom where it says “Check Zip Code,” enter your zip code, and then follow the prompts. You can read all about the Parity Act at the above link.
Based in the UK
“The Huntington’s Disease Association exists to support people affected by the disease and to provide information and advice to professionals whose task it is to support Huntington’s disease families. The HDA is financed through the generosity of trusts, foundations, the statutory and corporate sectors, branches of the HDA, members and friends.”
- You can find a list of their local support groups HERE.
- There are many ways for you to fundraise and get involved HERE.
- You can search and find nearby HD specialists HERE.
HDA Social Links:
Based in Europe but also serves the US, New Zealand, and Australia
“The Huntington’s Disease Youth Organization is an international non-profit organization set up to specifically provide support for young people around the world impacted by Huntington’s disease.”
- You can search for local support around the globe HERE.
- You can join HDYO HERE.
- HDYO provides national camps for youth affected by HD completely free of charge. You can view their events HERE.
- There is a fun, animated site called HDYO Land that teaches young people more about HD HERE.
HDYO Social Links:
“The International Huntington Association (IHA) is a federation of national voluntary health agencies that share common concern for individuals with Huntington’s Disease (HD) and their families. Each agency promotes lay and professional education; individual and family support; psycho-social, clinical and biomedical research; and ethical and legal considerations related to Huntington’s Disease in its respective country.”
“Huntington’s Disease Foundation’s vision is to 1) Fund, promote, and support research laboratories and medical research in the efforts that are working towards developing a cure for Huntington’s Disease; 2) Create signature programs that will assist and council individuals, families and those whom are affected with Huntington’s disease providing them mechanisms to assist in coping with everyday problems the disease presents; and 3) To bring awareness and education to the overall public, including all public services and health industries about Huntington’s disease.”
- You can fundraise HERE.
- You can find a list of upcoming events HERE.
- You can write about your HD experience HERE.
HDFI Social Links:
“Our mission: Assisting families with Huntington’s Disease by providing knowledge and support through support groups, creating awareness about HD through fund-raising and providing financial assistance where possible.”
- Find information on the support group in Cape Town HERE.
- Find information on the support group in Gauteng HERE.
- Learn more about their events and fundraising HERE.
- Contact them HERE.
HASA Social Links: