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"No act of kindness, no matter how small, is ever wasted"
You can join the TNSSG group or our cause on FACEBOOK
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This is Wanda Robinson Upperco, MD21155 USA Hello, My name is Wanda Robinson, and in addition to being the founder of The Noonan Syndrome Support Group, Inc. I am my husbands wife, and my children’s mom. Eleven years ago the Alliance of Genetic Disorders asked me to become a support group for Noonan Syndrome. At the time, I was looking for information about Noonan Syndrome and Growth Hormone. My oldest child has Noonan Syndrome and Growth Hormone was being considered as a possible option. Having access to the Internet I found a support Group in the UK who had an incredible amount of information! This made me angry! As a resident of the United States, I did not understand why more information was not available to parents here. So, in 1996 I created a list serv hoping to ‘meet’ just one more parent with the same issues I had, or just one other person that had a child with NS. That was more than 11 years ago, and as of today our group has been in contact with people from all over the world. The person in my life affected by Noonan syndrome is now an adult. Interning this year at Walt Disney World, she will complete her AA degree in the spring. Our journey has taken many paths, with no road map to guide us, we will always be grateful to an increditable group of doctors who cared enough to make a difference in our lives.
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