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How did you start advocating for HD?
I have been an HD advocate for almost 20 years. I have watched the diagnosis become unbearable to live with, such as my brother in law taking his own life at the young age of thirty. I have watched my mother in law’s slow demise and death, then the long slow demise and death of my dear husband Tommy. I have felt every family effect this disease has to offer including having to wait for Medicare.
What is the most rewarding part about advocacy?
The most rewarding part of advocacy is in knowing that I am part of a group of people making a change for those affected with this horrid disease. If I can reach out and ask my congress men and women to vote for bills that assist those affected and their families, then I am being heard, and in turn, educating and helping make a change so eventually one day a cure for HD will be found. Until then hopefully changes will be made to make life easier.
Why do you think it’s important for others to get involved?
I think it is important that others get involved with advocacy as well. The more educated and aware people are made of this, and any other disease, the more options and funding become available which in turn would lead to better progress towards ending HD and other neurological diseases.
How have you engaged others in advocacy efforts?
I have engaged others, by telling my families story to support groups, local newspapers, and by posting things on social websites, such as Facebook. My hope is not only to empower people but to also help make a difference in someone’s life. We can only hope that a cure will be found in the near future.
On May 19, 2011 I had the wonderful opportunity to go and meet with Alabama Congressman Spencer Bachus and ask him to support H.R. 718, the Huntington’s Disease Parity Act of 2009, which would waive the 24-month waiting period for coverage under the Medicare program for individuals disabled by Huntington’s disease. Congressman Bachus heard my family’s story and the struggle we had and he stated he would cosponsor H.R. 718.
What is your advocacy goal for 2013?
My goal as an advocate is not only to embrace every opportunity that crosses my path to educate those who are unaware of this horrid disease, but as well as to give hope to those for a better tomorrow. A tomorrow filled with overall better care and knowledge of their disease, our disease, a disease of which still remains to the masses, unknown.
The Huntington’s Disease Parity Act has been reintroduced as H.R. 1015 in the House, and S. 724 in the Senate!