RettSyndrome.org

Rettsyndrome.org is leading the revolution in Rett syndrome research. In 2016, Rettsyndrome.org committed $2.7 million to research services. To date, over $40 million cumulative research dollars have been awarded by Rettsyndrome.org in a quest to accelerate treatments and find a cure for Rett syndrome. With over 40 active grant and research projects, and 14 sites conducting clinical trials, Rettsyndrome.org is boldly moving toward our goal of treating and curing Rett syndrome.

Rettsyndrome.org also partnered with Newron Pharmaceuticals to create a video, which shares inspiring stories from our families.

Rett Syndrome Research Trust

The Rett Syndrome Research Trust (RSRT) was created in 2008 to achieve one goal – a cure for Rett Syndrome. To date, we have invested more than $42 million, more than any other Rett organization in the world, to advance research towards that goal. During the second half of 2016 RSRT undertook an internal review of our projects coupled with a comprehensive external research landscape analysis. This led to the development of a bold three-year, $33 million strategic research plan called Roadmap to a Cure. The plan, which was publicly announced in March of 2017, prioritizes potentially curative approaches. Gene therapy, which scientific data strongly indicates could successfully reverse the symptoms of Rett in those afflicted, is the lead program of Roadmap to a Cure. The expectation is that we will advance to the first clinical trials for Rett in gene therapy. RSRT is an exceptionally lean and efficient non-profit, with an average of 96% of funding going directly to its research program. RSRT is tremendously grateful for its alliances with RMRA and other Rett organizations across the U.S. and around the world, and for the support of thousands of affected families and their networks.

International Foundation for CDKL5 Research

The International Foundation for CDKL5 Research is proud to partner with the Rocky Mountain Rett Association to create the first CDKL5 center of Excellence, within their existing Rett Clinic at Children’s Hospital Colorado. Together with an amazing team of specialists, the Rett and CDKL5 clinic is a unique model of comprehensive care for patients. IFCR is a 501(c)(3) nonprofit who is governed by an all-voluntary Board of Directors and a distinguished Scientific Advisory Board. IFCR also has a wonderful group of dedicated Regional Family Representatives who reach out and engage local families affected by CDKL5. Please email us for CDKL5 specific inquiries and support: IFCR@CDKL5.com or visit CDKL5.com to learn more about CDKL5 Disorder.