Press Releases

Chuck Curley Executive Director, IRSF 781-762-2240 chuck@rsrf.org

August 29, 2007 - The International Rett Syndrome Association (IRSA) and the Rett Syndrome Research Foundation (RSRF), the world's two leading Rett syndrome organizations, announced today that all approvals necessary to effectuate their merger have been obtained. The merger, approved unanimously by both boards of directors and by over 99% of the voting members, will be effective on June 30, 2007. The combined entity, known as The International Rett Syndrome Foundation (IRSF), will continue to focus on research, family services and advocacy related to the treatment and cure of Rett syndrome.

The International Rett Syndrome Foundation's (IRSF) Board of Directors announced today the approval for funding 11 new research grants, 7 postdoctoral fellowship awards, and one new G.E.A.R. grant (Grants of Excellence to Accelerate Rett Research) to continue to foster research seeking treatments and a cure for Rett syndrome. Coupled with the research commitments carried forward from the IRSA and RSRF merger, the total of approved funding for the year sets a new record and tops $2,785,000. Grant applicants will be notified shortly regarding the status of their request.

The Board of Directors is thrilled to approve this record level of funding to many of the world's top investigators and research labs. It is through the combined efforts of our dedicated staff members, parent volunteers, and contributors that we are able to make this exciting announcement and continue to provide the funding necessary to find a cure and treatments. According to Chuck Curley, Executive Director of IRSF, "Due to recent research advancements, the search for treatments is more promising than ever; our goal is to identify approaches that will make treatments available for the thousands of girls and women affected by Rett syndrome."

In conjunction with this historic funding level, IRSF announces the resignation of Monica Coenraads as Director of Research. Monica has been a well known and highly respected member of the Rett syndrome community and helped create a world class research organization with a prestigious Scientific Advisory Board and many highly respected and valued advisors. As the mother of a child with Rett syndrome, Monica is personally invested in the success of IRSF and will continue to be involved with our mutual goal of finding a cure for our daughters and all those living with Rett syndrome. Her passion, drive, and concern for all those with Rett syndrome will remain with the Board and staff on a daily basis. Monica, who is leaving to pursue personal goals, leaves with our sincere thanks, gratitude and best wishes.

IRSF leadership is currently working with our scientific advisors to fill the critical position of Director of Research. It is our goal to attract a highly respected, credentialed scientist with a proven track record to lead our research portfolio, collaborate with our SAB, and advise the Board of Directors on all research matters. Discussions are underway and we hope to make an announcement soon.

Created from the July 1, 2007 merger of the International Rett Syndrome Association and the Rett Syndrome Research Foundation the newly formed International Rett Syndrome Foundation is the world's largest private funder of scientific research seeking a cure for Rett syndrome. The core mission of the IRSF is to fund research for treatments and a cure for Rett syndrome and enhancing the overall quality of life for those living with Rett syndrome.