Rett syndrome (RS) is a debilitating neurological disorder with a genetic cause that affects 1 in every 10,000 female births across the world. Imagine being a parent who discovers your child is not developing as excepted--your daughter quits walking and talking, loses the ability to use their hands, and seems to slip into a silent world of their own. In time, seizures may develop, as well as scoliosis and heart problems. RS has left your child disabled, requiring maximum assistance in every aspect of life. Throughout the course of this debilitating cycle, the one thing that remains intact is her intellectual ability. Cognitively, she understands, but she is trapped in a body that will not work for her.
We have an unprecedented and historic opportunity to fund crucial new research. The gene that causes Rett Syndrome has been found and a landmark study demonstrated the reversibility of Rett symptoms in mice. Rett syndrome has a known genetic link. It is being characterized as the “Rosetta Stone”, a key that will help unlock treatments and cures for other disorders including autism, schizophrenia, Alzheimer’s, Parkinson’s, anxiety, and autonomic nervous system disorders. With SUKI Foundation fundraising efforts, so many lives can be changed by providing support and helping to find a cure for more than just those diagnosed with Rett Syndrome. So many lives could be changed with a cure!!
Thank you for visiting our site. We appreciate your love, prayers, and support on this journey.
Marie & Brian Bateh
Co-Presidents, SUKI Foundation