Giving from the heart

It’s the time of year that folks start thinking about helping other people.

Some do it out of love, some do it out of love and for the tax write-off. People have asked me where their HD dollars would go farthest, and I don’t have an answer for that. Find an organization that speaks to your heart and give to them. Here are a few organizations that are close to my heart.

The Huntington’s Disease Society of America (HDSA) is one of the oldest, most well-known organizations. It provides information and support to families affected by HD as well as research dollars towards finding a cure. If you want your donation to go straight to research, you can indicate that when you donate.

To donate to HDSA, go to Or mail a donation to:

Huntington’s Disease Society of America
505 Eighth Avenue, Suite 902
New York, NY 10018  is a grassroots organization that is creating a documentary about what it is really like to have Huntington’s Disease. The film will feature content from around the world and will be perfect for an international audience. NOTE: THIS ORGANIZATION IS NOT A NON-PROFIT. YOU WILL NOT GET A TAX WRITE-OFF FOR DONATING HERE. BUT THAT’S NOT WHAT IT’S REALLY ALL ABOUT, IS IT? Of course not. The filmmakers have dedicated themselves to the completion of this project and donations in any amount would help bring a true awareness of HD to people all over the world. You can donate through their website. Let them know whether or not you’d like your name mentioned in the credits of the film.

The Caring Voice Coalition is a non-profit organization that improves the lives of folks in the United States with chronic illnesses, one of them being Huntington’s Disease. One of the services they offer is helping people obtain disability benefits. When I say “help” I mean they do all the hard work, just ask you the questions, file appeals for you, appear at hearings on your behalf, all for not one cent of your money. I know this because they “helped” me with the disability process and they even sign forms assuring that they are not going to take any of your money. Getting disability is an emotional process, and the person I worked with was so compassionate. She really was a caring voice. They also provide financial grants to help pay for some prescription copayments, help people find affordable health insurance plans and much more. Even if you aren’t able to donate to them, you should check out their website to see the great things they are doing.

HDYO Help, information and understanding for children and teenagers around the world who are touched by HD. Just go to the site and you’ll see why it is incredible.

HD REACH  I’ll close by bringing it home to North Carolina. HD Reach is an amazing non-profit which provided me with information and assistance starting from the whether or not to get tested phase through the shock of the positive diagnosis. They guided me to Caring Voice Coalition to obtain disability benefits and introduced me to the incredible neurological and psychiatric resources which help me to navigate the disease. HD Reach has knowledgeable, compassionate social workers who provide consultation and hold support groups throughout the state for families affected by HD. When I tested positive, I didn’t know what to do next. The staff knew what I was dealing with and supported me during each step of the process.   I wish every state had HD REACH. I don’t know if more financial support would make that possible, but they operate entirely from donations so every HD penny you give them will be used to its fullest to help someone with HD. So even if you are one of my South African or Canadian readers, you can help people with HD here in in North Carolina.

Do you have a favorite HD organization? Leave a comment about it.


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