In 1969 I learned about the Committee to Combat Huntington's Disease (CCHD) and it took me another six months before I had the courage to write to Margery Guthrie and offer my help.
Irene Kelley had also expressed an interest to Margery so Irene, Margery, George (my husband) and I met at a hootenanny run by Bob Gand. That night we began the Midwest chapter of the Committee to Combat Huntington's Disease. Since our inception the Midwest Chapter gave birth to the Wisconsin and the Indiana Chapters.
After several years, CCHD grew into the Huntington's Disease Foundation of America (HDFA). Our area includes all of the State of Illinois. Our board was small so we all learned to wear many caps and became devout volunteers doing every job that came along. In time, HDFA became the Huntington's Disease Society of America - Illinois Chapter (HDSA-Illinois Chapter) which we are known as today.
For the last 15 years I have been the treasurer for our chapter and during that time it has been my pleasure to work and learn with some wonderful people. Each board member wears multiple hats plus maintaining families and jobs in their regular lives. Our only organizational compensation is knowing that we are helping HD families.
I am at risk and the odds get smaller each year as I get older, but I feel it's my job and duty to keep working for a solution to help families with HD. My father and two brothers had HD and my sister has cerebral palsy, so I am well acquainted with family involvement in medical situations.
In 1995 when I was visiting in Boston, I received a call from the president of the Illinois chapter telling me that the HD gene had been found and there was to be a presentation to the media in Boston. It was a very exciting moment for me to attend that meeting - not only for the news but to see some "old" friends I had met through my years of working in HDSA.
I would like to encourage all of you to get involved at any level you feel you can manage. Your voice will not fall on deaf ears - we know how you feel. Most of us have been where you are at in one form or the other. We have support groups throughout the state and if there isn't one in your area, I encourage you to start one.
Created and maintained by Renette Davis. Send comments to Renette by here.
Created: July 4, 2000
Last updated: Dec. 4, 2010