October 28, 2012
I was in contact with my dear sister when her firstborn child first had seizures and she didn't know what could be causing them...was with her through the long dark days when she frantically looked for help and found only ignorance and discouraging pessimism among doctors...and, as the wife of a special ed. teacher, I knew about the magazine called EXCEPTIONAL PARENT, and encouraged her to write to them. She did, and the rest, as they say, is history! I have watched how this organization, that she and the other 3 moms she found in California started, has grown and helped countless families worldwide. I know how much it meant to her and her beautiful daughter as their family struggled for 31 years to give their one TSC person as full a life as possible, in spite of her terrible disease. And all the while my sister has worried that her other 3 children might also develop it, or if not them, maybe their children...because so little was known about the cause or treatment. Now that worry has diminished at least, because so much progress has been made by dedicated medical scientists and doctors, with the organized help from all those motivated parents and families, and lots and lots of volunteers who have been enlisted in their cause. And as a person who works with medical scientists, I know that every breakthrough in one of these genetic diseases has an impact on many others--including cancer, autism, Parkinson's, multiple sclerosis, and Alzheimer's. Someday this growing body of knowledge is going to make cures and treatments available for many more people beyond the TSC community, too. It already has advanced our collective understanding enormously, and the influence grows exponentially. This disease that was once thought to affect so few people that it "wasn't worth studying" has turned out to be the impetus behind so much positive change for so many...surely there is a lesson there for the world, on so many levels!
Will you volunteer or donate to this organization?
How much of an impact do you think this organization has?
When was your last experience with this nonprofit?
MY ROLE:General Member of the Public