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How did you start advocating?
It has only been about six years since finding out that HD is in my family. It was lifechanging news. I was scared, I was angry, I was confused, I felt helpless. My Dad was ill, my eldest sister had tested positive, and the fate of my other sister and myself were hanging in the air.
I needed to find a place to direct the intense emotions that I had to get involved to find out how to help my Dad.
I searched the HDSA website for something to get involved with that would educate me as well as inform me of resources to go to for help.
I saw the advocacy link, I signed up and sent a letter to my Congressman. Luckily, I had an immediate response from my Congressman's office and it only took a call and a letter to get him on board as a cosponsor of the Huntington’s Disease Parity Act. This success fueled me to do more.
What special perspective do you bring to advocacy and why is this perspective important?
I am the youngest of three children aged 45, 47 and 49. We are all HD positive. In the near future we will all be in the position of applying for Social Security Disability. The thought of any one of us being out of work with no medical benefits is frightening. I felt a sense of urgency to do something before we were in need, so we wouldn't be helpless.
What is the most rewarding part about advocacy?
It is s knowing that I am part of a group of people that are making a change. It is the proud feeling that I get when someone recognizes my efforts and thanks me for the work I've done. It's the sense of pride knowing that I am helping not only my own family, but thousands of others. The rewards feed on themselves. The more recognition that I get, the more motivated I become to please everyone.
Why do you think it’s important for others to get involved?
We need to get more folks involved simply because there is strength in numbers. We are going into our third session of Congress where the bill will have to be re introduced and all the congressmen and senators will have to be contacted again to gain their support once again. This is not a difficult process, but when the offices are hearing from lots of people they tend to react quicker and with more interest.
How have you engaged others in advocacy efforts?
I enjoy speaking about advocacy because I am proud of the success that I have had. In an effort to engage others to get involved, I have told my story at support groups, local and state education events and the national conference in Minneapolis. I love to share my stories with potential advocates and empower them by telling them what worked, and what didn't work for me. My best advice is always to remember that our Congressman and Senators work for us - if you can embrace that you will find that the confidence you need already resides in you. You just need to tap into it.
Get involved! Join the HDSA E-Advocacy Network at www.hdsa.org/join