The Rett Syndrome Research Trust (RSRT) is a non-profit organization with a highly personal and urgent mission: a cure for Rett Syndrome and related MECP2 disorders.
RSRT operates at the nexus of scientific activity by enabling advances in knowledge and driving innovative research through constant engagement with academic scientists, clinicians, industry, investors and affected families. These relationships catalyze the development and execution of a research agenda that neither academia nor industry could achieve alone.
We identify, solicit, evaluate, prioritize, fund and monitor ambitious research projects that have the greatest likelihood of impacting the lives of those afflicted with Rett Syndrome. To date we have awarded $25 million in financial support to: 33 scientists in 27 academic institutions; 3 biotech companies; 4 clinical trials testing 3 compounds.
We refute the conventional practice of labs working in isolation and promote and fund collaborations and consortia in which scientists work across multiple disciplines. We conceptualized and launched 2 consortia (MECP2 Consortium and the Gene Therapy Consortium).
We are risk takers who do not shy away from bold projects that are unlikely to be funded by NIH or other more traditional funding agencies.
Through close monitoring of scientific literature we identify and recruit the interest of scientists doing work relevant to our mission. We organize scientific meetings throughout the year favoring small, invitation-only gatherings to promote in-depth discussion and ensure participants of confidentiality, allowing them to share data long before publication, a process that can take years.
We provide accurate, timely research information to the Rett family community without bias or spin. We operate with transparency and strict accountability to the public and to Rett families in particular.
We are funded almost entirely by parents of children with Rett and their networks in the US and abroad. We have forged alliances with organizations who support our work.