RETT SYNDROME RESEARCH TRUST INC
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Mission Statement
Imagine the symptoms of autism, cerebral palsy, Parkinson's, epilepsy, and anxiety disorders....all in one little girl. Now imagine these symptoms vanishing...one by one. This is the work of the Rett Syndrome Research Trust. We are an organization devoted to international research on Rett Syndrome and related MECP2 disorders with one goal: finding a cure.
About This Cause
Imagine the symptoms of autism, cerebral palsy, Parkinson's, epilepsy, and anxiety disorders....all in one little girl. Now imagine these symptoms vanishing...one by one. This is the work of the Rett Syndrome Research Trust. In 1999, RSRT Scientific Advisory Board member Huda Zoghbi established the link between the MECP2 gene and Rett Syndrome. In 2007, RSRT Trustee and Scientific Advisor, Adrian Bird, dramatically reversed Rett Syndrome symptoms in mice. To see the damage of Rett Syndrome reversed not in mice, but in humans, will require an army of informed and committed supporters. Launched in the wake of the dramatic and unexpected reversal, RSRT has a single focus - to make Rett Syndrome the first reversible brain disorder. The speed of our success will, in large part, be dictated by the magnitude of our financial investments in high quality research. The scientists, technologies and ideas are in place - the next steps are clearly defined. The future of children and adults with Rett depends on research. Without it, they will be completely dependent and locked in for the rest of their lives. RSRT is supported by Rett families and friends who agree with the urgency of our cause and wish to see the science move forward full speed ahead. What is Rett Syndrome? Rett Syndrome is the most physically disabling of the autism spectrum disorders. Primarily affecting little girls, Rett often strikes just after they have learned to walk and say a few words, and begins to drag their development backward. This debiliating syndrome includes symptoms seen in many other severe neurological disorders on which Rett research may shed light. Currently there are no effective treatments for Rett. Most girls survive into adulthood and require total, 24-hour-a-day-care. Mutations in the "Rett gene" have also been found in individuals diagnosed with autism, learning disabilities, anxiety disorders, childhood onset schizophrenia, and other neuropsychiatric disorders. Research on Rett will have far-reaching implications for a myriad of disorders. MECP2 Duplication/Triplication Syndrome Unlike Rett Syndrome which is caused by mutations or deletion in MECP2, the duplication or triplication syndrome is caused, as the name suggests, by having an area of the X chromosome which includes MECP2, erroneously duplicated or tripled. Families of these children together with RSRT have created the MECP2 Duplication Syndrome Fund at RSRT. 100% of all fund raised supports research on the duplication/triplication syndromes.