Guest guest Posted September 1, 2003 Report Share Posted September 1, 2003 Dawn, Well I never thought of work with CMT as a " quest " . Since my childhood diagnosis there wasn't much info around in the early 60's. MDA had a brochure with 1 short page on CMT that was it. Later, I started getting newsletters by snail mail about CMT. The whole time I was thinking " 100 years without anything done " . Guess I started to get angry at this. Time went on and I was into my career in fundraising and still sort of upset that even in the newsletters I wasn't getting what I wanted. Like research news, like HOW MUCH LONGER 'TILL Treatment? etc. Once the internet came around, I figured I would use it as a tool to connect others and also find current research written by the researchers, not just interviews done in newsletters. Then I compare what's being done in the U.S. and what's being done in Europe, and I see a world of difference. Meanwhile time has gone on, Charcot, Marie and Tooth 'founded' CMT in the late 1800's and here we are in 2003 and WHAT has been done? A little more anger and I decided it is time to put it to constructive good use. There is still so much to do. After 100 years and $$$$$'s spent on research, we still have no arrestment. And meanwhile, there are still children growing up with CMT. I started our email discussion group to connect others with CMT throughout the world so we could share what helps us. Learning from the experience of others is very valuable. The Foundation is an outgrowth of that. I will give you a more interesting story of TOTAL on our 5th birthday, Sept. 21, 2003. ~ Gretchen Quote Link to comment Share on other sites More sharing options...
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