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I learned about Huntington’s Disease circa 1961, when my high school girlfriend shared with me that her grandmother had been diagnosed with it in 1959. In 1966, when in college, we went our separate ways, but my interest in HD stayed with me. I moved to New York and became a school psychologist, and whenever I ran across an article on HD in the newspaper or in a psychology journal, I would read it, but that was the extent of my involvement. In 1998, I had become an ordained clergyman, and then around 2006 or 2007, I saw a single article about a Team Hope Walk being held in a nearby town, but I heard nothing further. The next year, I looked for a repeat, wishing to join it, but I could not find any mention of one being held, and at that point, I reached out to the national office and inquired about that specific walk.
Although they could not put me in contact with a local walk, they did direct me to various fund raisers that were happening in NYC. I attended one, which gave me my first contact with the larger HD community. Then I saw an appeal for advocacy workers to visit their congressmen in Washington, D.C. Having done similar work for other causes over the years, I signed on. With the help of others, I was able to get my congressman to co-sponsor the HD Parity bill, as well as eventually both N. Y. Senators. In 2011, I retired from the ministry and moved to Washington State. I was asked to join the Northwest Chapter board as its advocacy chair, which I did, and in 2012, I was asked to take on the presidency of the chapter. My high school sweetheart and I are back together once again, and we support the chapter as best we can. Although she tested negative, others in her family of origin have tested positive, so at this point, I finally am in an HD family.
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