About Rett Syndrome & RSRT

Rett Syndrome

Rett Syndrome is the most physically disabling of the autism spectrum disorders and the leading cause of severe genetic impairment in females, with an estimated 16,000 individuals afflicted in the U.S., and more than 350,000 worldwide.  Classic Rett Syndrome affects females almost exclusively. Symptoms typically begin to appear in little girls between infancy and two years of age.  Onset may be heralded by hypotonia and delayed development, or by regression and loss of acquired skills, including speech and functional hand use.  As the disorder progresses, symptoms may include disordered breathing, sleep disturbances, severe digestive problems, orthopedic abnormalities, anxiety, apraxia, seizures, impaired cardiac and circulatory function and Parkinsonian tremor.  Many children with Rett Syndrome are wheelchair bound. Most victims survive well into adulthood; all require total, 24-hour-a-day care.  The cost, both financial and in terms of human suffering, is enormous.

There is no treatment beyond supportive, and often ineffective, measures such as feeding tubes, bracing, orthopedic and GI surgeries, and medications for anxiety and seizures.  Even though the prevalence of Rett Syndrome equals that of Cystic Fibrosis, Huntingtons and ALS, it is vastly underfunded in comparison.

Rett Syndrome Research Trust

The Rett Sydrome Research Trust (RSRT) was publicly launched in September 2008 to pursue the next steps toward treatment and cures for Rett Syndrome.  

RSRT Key Facts
Launched: September 25, 2008
Committed to Research: $25 million
Percentage of funds spent on research: 96%

Things to know about RSRT

We are not a grant-making organization passively waiting for proposals to be submitted to us. In sharp contrast, our unparalleled knowledge base and deep-rooted scientific connections put us in a unique position to identify, catalyze, evaluate, prioritize, support and monitor ambitious and novel research projects.

Our trustees are tenacious. The source of their inspiration is the promise of high-impact science to relieve the suffering of children and adults afflicted by Rett Syndrome and related MECP2 disorders.

Our supporters, rapidly growing in number, are discerning families from around the globe who draw strength from the knowledge that their efforts will have direct impact on their child’s future.

Executive Director Monica Coenraads is intimately connected with the daily experiences of these families. Her eighteen-year-old daughter is severely handicapped by Rett Syndrome. Commitment to RSRT’s goal is not a job to Monica, but an imperative. Our mission is to heal children and adults who will otherwise suffer from this disorder for the rest of their lives.

The symptoms of Rett Syndrome are relentless, and RSRT’s efforts are equally relentless. We are at work seven days a week. We are responsive to the need for accurate, timely research information without bias or spin. Our donors are our stakeholders; we operate with transparency, strict accountability and unwavering dedication. 

For more information about RSRT, please visit www.reverserett.org.