The Rett Syndrome Research Trust was launched in 2008, but our unique and effective strategies to support and stimulate research have been developing since 1999, when Huda Zoghbi identified the genetic cause of Rett Syndrome. In response to this turning point, a small, determined group of parents established the Rett Syndrome Research Foundation (RSRF) to accelerate and intensify scientific exploration. Co-founder and Scientific Director Monica Coenraads set a tone of dynamic exchange, energizing the field with new approaches, conferences and seminars and the engagement of extraordinary scientists from diverse disciplines. Progress at RSRF was strong and steady and by early 2007 Monica was working on a press release to announce the startling news that Adrian Bird, Chairman of RSRF’s Scientific Advisory Board, had successfully reversed the symptoms of Rett in an animal model.
Just as Huda Zogbhi’s discovery had opened new lines of inquiry, Adrian Bird’s reversal galvanized the scientific community and infused Rett families with hope and urgency. Existing Rett organizations were reconfigured. The Rett Syndrome Research Foundation (RSRF) blended with the older, multifocused International Rett Syndrome Association (IRSA), founded by Kathy Hunter in 1984. Retaining much of that association’s structure and emphasis, the combined entity was renamed the International Rett Syndrome Foundation (IRSF).
And once again, a small group of experienced, research-oriented parents took a hard look, assessed priorities and swiftly created an agile, streamlined, highly efficient nonprofit devoted exclusively to science: the Rett Syndrome Research Trust. With Monica Coenraads as Executive Director, and the participation of every scientist responsible for the past decade’s major breakthroughs, the Trust immediately distinguished itself in the research community. We are known for innovation, intellectual rigor, deep knowledge of the field and nonstop determination.
RSRT Key Facts Launched: September 25, 2008 Committed to Research: $20 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 seventeen-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.