HD Advocacy: The Huntingtons Disease Parity Act

As many of you know I have not been working for the past three months because of my HD. My movements were getting way too bad and my balance was off a lot. I just felt that I was always exhausted and stressed; two things that are not good for my physical symptoms. Now, three months later, I am physically I feel so much better but I deeply miss my students.

I was passionate about being a teacher of students with Autism. It was all I wanted in life; was to teach and be a mom. I truly found my niche with teaching autistic students and I felt like I could have taught them forever. I honestly looked forward to going to work. I loved my students. 

Since I have not been working, I applied for social security  disability on April 25th. I finally had a phone appointment about six weeks ago. But now I have to wait even longer just to see if I will be eligible and will qualify for benefits. If I did not have my parents to help me I would be in a lot of financial trouble. I can't even imagine if I had a family to support.

There are many diseases that are considered "fast tracked", meaning if you have that disease you receive disability sooner. HD is not one of them. The waiting period for those with HD is way too long. The SSA guidelines for HD are 30 years old and are medically inaccurate. This means although some people suffer from HD and cannot work, they are denied benefits because their symptoms don't meet the SSA's definition of Huntington's Disease.

I have some brave and insipiring friends in the NYA who are in D.C. right now trying to make that change. They are trying to pass the Huntingtons Disease Parity Act.


This Act will direct the commissioner of the SSA to revise the outdated guidlines and offer more people with Huntington's Disease disability benefits.

Good news. YOU can help pass the act just by clicking here All you have to is enter in your zip code and an automated letter will be sent to your congressman. It would mean so much to me and all my friends within the Huntington's Disease Community if you could take 3 minutes to help us out!

Thanks for your support,
Alex