In January 2014, shortly before she turned three, our daughter Lily was diagnosed with Rett Syndrome. This is a disorder that happens spontaneously, randomly, and to people on all walks of life.
Rett syndrome is a genetic neurological disorder occurring almost exclusively in females and becoming apparent after 6-18 months of early normal development. The resulting regression leads to lifelong impairments, including lost speech, seizures, scoliosis, irregular breathing patterns, and more than half of the children and women lose the ability to walk. Those diagnosed with Rett Syndrome require maximum assistance with basic daily activities.
We believe that a cure is possible in her lifetime. But not without the support of people like you. You can save her and thousands of other little girls around the world. Your donation will help fund essential research of effective treatments and to find a cure for Rett.
Please. Join this fight.
What is Rett Syndrome?
Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.
Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.
Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.
Who is RSRT?
The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive the development of treatments and cures for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world’s premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.
By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.