My Nonprofit Reviews

Our 27 year-old daughter with Rett syndrome needs us to meet all her needs and to do that we need Rettsyndrome.org Formerly the International Rett Syndrome Foundation (IRSF) Rettsyndrome.org remains the leader in family support and research. There is no other organization that supports families with Rett syndrome the way Rettsyndrome.org does by providing a professional staff to provide direct support to families and to lead a dedicated group of parent volunteers who help educate and support families, and help increase awareness and advocacy in all 50 states. Like many older parents I’ll never forget the agony of spending long years not knowing what was wrong with our daughter, nor our gratitude to find support through the former IRSF when we did. The advances made because of rettsyndrome.org are too many to list here, so I will name just two. The first ever clinical drug trial for both women, and girls and this month opened it’s 10th site nationwide. And the multi-year Natural History Study, led by Dr. Alan Percy continues to provide invaluable information for both parents, and the medical community. Part of the Rettsyndrome.org's Medical Advisory Board, Dr. Percy also directs of one of the 22 expert clinic sites supported by Rettsyndrome.org around the US. Both parents and leading researchers support Rettsyndrome.org I hope you will too.