Hello, my name is Pamela Hauck and I'm the the secretary of TNSSG, Inc., and also serve as the Florida state representative. On August 3, 1996, my granddaughter was born with Noonan Syndrome. Unlike many new parents, my son and daughter-in-law knew before she was born that she was going to have a syndrome. This was determined when Cystic Hygroma was detected on the sonagram roughly 4 months into the pregnancy.

In searching for answers, I was introduced to the Internet by a friend. He had surfed the Net and found information on NS, as well as The Noonan Syndrome Support Group, Inc. Little did I know how much that introduction would change my life. I have been actively involved with this non-profit organizaiton since that time (March 1997). TNSSG, Inc. offers support, networking, and information to those whose lives have been touched by NS.

The State Rep Program is newly founded. It is our intention to reach out locally to those affected by NS.

THE STATE REPRESENTATIVE PROGRAM IS MADE POSSIBLE IN PART THROUGH THE GENEROUS GIFTS IN MEMORY OF ALEX GOODSON.

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TNSSG, Inc. can provide you with a "Parent Package" which contains pertinent information relative to NS. If you would like more information on Noonan Syndrome, please e-mail me at the address listed below, or e-mail me at bandit95@juno.com. Questions - you can reach us at 1-888-686-2224 in the continental United States.

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This group is self funded. Contributions are gratefully accepted, making it possible for us to provide information and printed materials to families in need. Thank you for your interest in Noonan Syndrome.

FACTS/INFORMATION

• A genetic condition that affects both children and adults
• Generally recognized by congenital heart disease - pulmonary stenosis
• Some Features - short stature, droopy eye lids, low set ears
• Individuals can be mildly to severely affected
• Affected individuals may have learning difficulties, behavior problems and many anomalies
• Not only can this condition affect the heart, it can also affect growth, blood clotting, mental and physical development
• To date, no clinical test available to diagnose (diagnosis can be made by a genetics doctor through family history)
• There is no cure

Information & Resources

The Nooan Syndrome Support Group, Inc.
Gallery of Stars (pics of some of our kids)
List and Glossary of Medical Terms
Pharmaceutical Information Network
Cardiac Kids
Special Hearts

Email: pamela_hauck@csx.com