New Jersey Rett Syndrome Drive Fore the Cure

About Rett Syndrome

Children with Rett Syndrome appear to develop “normally” for the first six to eighteen months after birth, then enter into a degenerative stage of the disease. The child rapidly begins to lose their speech; and ability to communicate verbally is replaced with the use of their beautiful penetrating eyes. Purposeful hand use is lost as well and replaced with repetitive movements; the children can no longer feed themselves or even hold onto their favorite toy. Additional symptoms that de- fine the syndrome include; digestive difficulties, breathing abnormalities, seizures and severe scoliosis. It is a life of pain, frustration, and total dependence. Rett syndrome occurs spontaneously in approximately 1 in every 10,000 female births and even fewer males.

About NJ Rett Syndrome Association (NJRSA)

NJRSA is a NJ 501(C)3 organization established in 2007 to contribute towards an improved quality of life for individuals affected by Rett syndrome in the New Jersey area, raise awareness and funds for research. Our dedicated researchers are attacking Rett syndrome from every angle; gene therapy, pharmaceuticals, wearable devices and neuro-habilitation. Daybue, the first FDA approved drug to treat Rett syndrome is now available to prescribe to our Rett patients. Another first in Rett syndrome, Taysha Gene Therapies announced the first Rett patients have been dosed the investigational gene therapy, TSHA-103, in a clinical trial for females 18 and older and Neurogene has dosed the first patients in a trial with the gene therapy treatment NGN-401 in pediatric females. We are very proud to have supported this game-changing research, believing the best is yet to come.

In addition to supporting research, our partnership with the Program for Research and Support for Rett Syndrome at Monmouth University is providing speech therapy and evaluations as well as family support and educational seminars for parents and professionals.

Every dollar makes a differnce. Your help is our hope. Thank you!

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