Knowledge and understanding leads to positive results for people of all abilities. 

Find out how you can help insure positive results. Be a part of the answer.

• One of the first things a parent asks when they hear the words Noonan syndrome is.... "Will my child with Noonan syndrome be cognitively impaired (mentally retarded)?"

• In information published about Noonan syndrome it was typically said that people with Noonan syndrome are mentally retarded.

• One of the first documents published by our group in 1996 recognized and stated that our children "most often have normal intelligence, and approximately 1/3 of individuals with Noonan syndrome will have learning disabilities and some will have mental retardation." ¹

1 Maura Kenton, MS Eric Wulfsberg, MD, TNSSG, Inc. Understanding Noonan syndrome A Parents Guide 1996

• In 1999 it was revealed the more severe cardiac defect and more evident facial and skeletal anomalies, was associated with a specific pattern of deficits and capacities in cognitive functioning.²

2 Van der burgt I, Toonen G, Rossenboom N, Assman-Hulsmans C, Gabreels F,Otten B, Brunner HG, Patterns of Cognitive functioning in school-aged children with Noonan syndrome associated with variability in phenotypic expression. J Pediatr 1999; 135: 707-713

• A paper published in 2002 uses these words "varying degrees of mental retardation" as a characterization of people with Noonan syndrome.³

3 M. Menahe, R. Arbel, D. Raveh, R. Achiron and S. Yagel , Poor prenatal detection rate of cardiac anomalies in Noonan syndrome Ultrasound Obstet Gynecol 2002; 19: 51-55

Class of 2004 
  

Honor Role Student. Plans to attend collage to become a nurse.    

• We need your help, our children can and will succeed, but only if we give them the tools they need. 

• Our strength as a group is in our ability to unite as a family. 

• One voice advocating for our children's rights.  The right to a free and appropriated education (in the USA).      

• As a group, we are in a unique position of having an opportunity to validate and improve educational outcomes and treatment of people with Noonan syndrome. However, we need your help.    

Here is what you can do, mail TNSSG a copy of all non-medical results from evaluations of affected individuals in your family. These would include but not be limited to:

Academic Performance

Communication

Motor Skills

Sensory Status

Health/Physical Status

Functional Skills

Emotional/Social/Behavior Development

• All individual results are confidential. Dr. Thomas Baumgartner* has agreed to review our collected records with the expressed purpose of presenting the initial results at our 2004 conference.

*Dr. Baumgardner is a clinical neuropsychologist in private practice in Lutherville, Maryland where he specializes in the assessment and treatment of children and adolescents with behavioral, learning, emotional, and cognitive disabilities. He received his Doctorate in 1994, including Internship and Post-doctoral training at the Kennedy Krieger Institute. From there he joined the research team of the Learning Disabilities Research Center at KKI, where he studied children and families with Turner’s Syndrome, Fragile X Syndrome, Tourettes Syndrome, Neurofibromatosis Type-I, and Reading Disability. While remaining involved in clinical research and publication, Dr. Baumgardner’s clinical work includes providing neuropsychological evaluations for primarily children but also adults. He is part of a multidisciplinary group of psychologists, psychiatrists, social workers, and behavioral pediatricians who provide a collaborative approach to behavioral health problems.