Rett Syndrome Research Trust

The Rett Syndrome Research Trust is exclusively focused on accelerating the development of treatments and cures for Rett Syndrome and related MECP2 disorders.

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.