NJRSA

Rett syndrome (RTT) is a devastating neurological developmental disorder that is seen in infancy and occurs almost exclusively in females. It is usually caused by a mutation of the MECP2 gene on the X chromosome. Rett syndrome is found in all racial and ethnic groups throughout the world, and in every socioeconomic class.  RTT affects approximately 1 in 10,000 live female births.  Early developmental milestones appear normal, but between 6-18 months of age, there is a delay or regression in development, particularly affecting speech, hand skills and coordination.  A hallmark of Rett syndrome is repetitive hand movements that may become almost constant while awake. Other features include seizures, irregular breathing, swallowing difficulties, and curvature of the spine. Many individuals with RTT live a normal life span. There are currently no known treatments and no cure. For more information please go to www.rettsyndrome.org.

The mission of the New Jersey Rett Syndrome Association is to contribute towards an improved quality of life for girls and women affected by Rett Syndrome. We have teams of physicians familiar with RTT in New Brunswick and Camden NJ . By operating a Rett Syndrome center we can provide an effective health care system that will encourage effective diagnosis and ongoing treatment of Rett Syndrome.

We also believe that by raising public awareness of Rett Syndrome we can foster public attitudes conducive to early diagnosis, intervention and treatment of our children as we encourage and support research for the cure of Rett Syndrome.

We hope this website will link local families together, help provide some of  the resources we all need for our children and keep everyone informed of the many events and activities in NJ. Please send us your pictures, videos and stories to share and contact us if you have ideas for something you would like to see added.

We look forward to hearing from you!

Leslie Greenfield