A diagnosis of an MPS disorder is devestating to a family. My daughter also has MPS 1 or Hurler Syndrome. I wish I had the connections or the power that Mr. Turner has so that I could raise awareness and help fund research for treatments for these wonderful children. Please watch this little video to learn more about MPS disorders.
http://www.youtube.com/watch?v=W7VKAhIWpPM
As a heartbroken mom of a child with MPS III, I too would love it if Ted promoted awareness of this devastating disease. He must have his reasons, however only by raising awareness and funding will we ever help our children find a cure or treatment. Jerry Lewis sure has done wonders raising money for "Jerry's Kids" ...Mr. Turner could do that and more for our MPS kids.
I am curious why Ted Turner wouldnt take these opportnities to speread awareness of the rare storage disorder 'MPS I-Hurler syndrome' that his grandchildren have?????? www.mpsidisease.com
Interview With Ted Turner
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