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, lose the ability to use their hands, and seem 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.

SUKI Foundation is a not-for profit organization created in honor of our daughter, Sarah Katherine, affectionately known as Suki, following her diagnosis of Rett Syndrome at age two. In efforts to raise awareness and assist children in reaching their potential through early intervention services, SUKI Foundation is dedicated to improving the lives of those affected with RS and other neurological disorders. With early detection and diagnosis, the life of a child with RS can greatly be improved. Funds will assist families in early detection, and upon diagnosis, be instrumental in assuring Early Intervention by providing support, education, and the most therapeutic services possible through Early Learning Programs.

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.