Founder of The Noonan Syndrome Support Group, Inc.
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. Two 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 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 2 years ago, and as of today our group has been in contact with
people from all over the world. We mailed over 800 news letters in January of 1998.
Our first meeting held in Maryland on November 1, 1997 was attended by over
190 people from around the world.
Above you can see my ‘Pocket Blog’. The code to enable me to add this feature on my own website is, provided free by VIG enabling visitors to my site to be able get quick access to my latest posting on VIG.
These are photographs I have taken, simply, for my pleasure, enjoyment and my hobby. They also capture images that I wanted to remember. If you have an interest or a question about any of my pictures then feel free to contact me..
Visit our web site at:
http://www.noonansyndrome.org for more information about Noonan Syndrome.
Here is your navigation code, please cut and paste AS HTML to your website
http://www.angelfire.com/md/wandarmd/index.html
Or call toll free 1-888-686-2224 within the USA or 410-374-5245.
