Rett Syndrome is a debilitating neurological disorder that predominantly affects females*. It is the leading genetic cause of severe impairment in girls, brought on by a single gene mutation that leads to underproduction of an important brain protein.
Kids are born “normal,” but without the protein, begin to lose acquired skills between 1 and 3 years old. Many lose their ability speak, walk or use their hands, and depend on their families for every part of their day. Complications include seizures, sudden death in their sleep and scoliosis.
Despite their physical disabilities, girls and boys with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought. Amidst the mass confusion in their central nervous systems, they are smart, strong, and waiting bravely for us to unlock the door to their recovery.
Today, there is no cure. But Rett Syndrome is CURABLE! Research has proven once protein levels are back to normal levels, symptoms subside.
Researchers at Harvard, Baylor, UVA, Weill Cornell, Emory, Salk Institute, University of Edinburgh and dozens of other top-notch institutions are delving into Rett Syndrome.
Not only will their work help thousands of children and adults worldwide, but their findings have a direct impact on research on Autism, schizophrenia, bipolar disorder, Alzheimer's and many other disorders.
In essence, our kids may hold the key to a cure for millions of people suffering from dozens of disabilities.
Funds we raise to dedicate to research are sent to the Rett Syndrome Research Trust. Check out our research page to learn more about the projects were are helping to fund.
“Rett Syndrome has been reversed in the lab and could be one of the first childhood neurological disorders to be cured. We are hopeful Rett research could also lead the way to treatments for millions of others suffering from these types of disorders.”
Aleksandra Djukic, MD PhD
Director, Tri-State Rett Syndrome Center
Associate Professor of Neurology and Pediatrics
Montefiore Medical Center
Albert Einstein College of Medicine
*While Rett Syndrome mainly affects females, we do have some amazing boys we know who are battling Rett as well. We open our arms to them and extend a flower. We may be pink and girly and all that, but there's enough love to go around!
I am not only a volunteer and donor, I am also a mother of a Rett girl. This organization is more than inspiring! They made me want to do more than just wish and pray for a cure, but rather become part of finding one! They make you feel so welcomed and understood, as if they have known you all your life.