If you would like to add your introduction to these please send it to info@noonansyndrome.org

Every once in awhile families want to communicate directly with people who live near them, or who may share similar issue. In the past we have listed these introductions on our web site.   I invite you to introduce yourself and your family, here is a place you can include web links to family pages and pictures or things that are of interest to you.   This can be as short or as long as you like. 

Your email will serve as your authorization to place your introduction on our web site.  Please include:

Name:

Email Address:

City and State:

Country:

How or why you are connected to Noonan syndrome:

Tell your story-new families need to hear about your journey, I often think that the Poem, “Welcome to Holland” c1987 by Emily Perl Kingsley http://www.our-kids.org/Archives/Holland.html , is not quite where I landed when talking about our journey!

 Introduction / introduce yourself and your family, NS Topics might include:  loss of a loved one, general health, getting diagnosed, school, medical care, issues related to Noonan syndrome, issue not thought to be related to Noonan syndrome, being an adult with Noonan syndrome :

Here is a place you can include web links to family pages  and pictures or things that are of interest to you.

These will be placed on our web site www.noonansyndrome.org in area called Meet our Families. 

 

In October, we mailed more than 2000 Noonan Connections (the Groups news letter)  in the USA . Every page of this news letter asked people to return a renewal form, verifying that they wanted to continue to get information from TNSSG, and if they were on the contact list, that they wanted to remain on that list as well.  Less than 100 have been returned. 

If you did not get your newsletter we will be making a abridged edition available on the website, the renewal form will also be placed on the web site. 

 I look forward to reading your stories, soon .

 

 

Wanda

Wanda Robinson

President TNSSG, Inc.

 

12-8-07