Trumbull, CT (PRWEB) February 14, 2013
The Rett Syndrome Research Trust (RSRT) affirmed its mission to drive innovative science by awarding $4.2 million in 2012. This amount represents the largest research commitment in a given year ever allocated by a Rett organization. The awards were made possible by the fundraising efforts of highly motivated families and supporters of children and adults with Rett Syndrome in the US, and through our global partnership with Rett Syndrome Research Trust UK and Rett Syndrome Research & Treatment Foundation (Israel).
Rett Syndrome, the most physically disabling of the autism spectrum disorders, is caused by random mutations in the gene MECP2. Predominantly affecting girls, a frightening regression in toddlerhood robs children of the ability to speak, move normally and use their hands. Disordered breathing, Parkinsonian tremors, severe anxiety, seizures, digestive, circulatory and orthopedic problems typically appear. Although most children survive to adulthood they require total round-the-clock care.
“Our goal is not to fund research but to fund results. Ultimately, the measure of our success will not be in terms of dollars spent but whether we will have dramatically improved the quality of life of the people we serve – children and adults with Rett Syndrome. We believe the projects we chose to support in 2012 will help us achieve that goal,” said Tony Schoener, Chairman of the Board of RSRT.
RSRT awarded funds in 2012 to the following projects:
Benjamin Philpot explains, “If a drug could be identified to efficiently and effectively activate MECP2, we would be attacking Rett at its very root, with the potential of reversing the disorder. Our entire team is excited about the possibilities and we’re ramping up the project as fast as possible.”
Monica Coenraads, RSRT’s Executive Director, said: “Our approach to funding research is somewhat different from that of more traditional research organizations. We don’t request proposals and wait, hoping for someone to submit an interesting project. Instead, we spur the research agenda by engaging closely with the scientific community each step of the way, so that together we can identify the most promising areas and invest in them quickly. As parents of daughters with Rett Syndrome, we don’t have a moment to lose.”
About the Rett Syndrome Research Trust
The Rett Syndrome Research Trust is the premier organization exclusively devoted to global research on Rett Syndrome and related MECP2 disorders. Our goal is to heal children and adults who will otherwise suffer the effects of these disorders for the rest of their lives. To learn more about the Trust, please visit http://www.ReverseRett.org
Our partners in supporting this work are parents' organizations worldwide including RSRT UK, Rett Syndrome Research & Treatment Foundation (Israel), Stichting Rett Syndrome (Holland), Rett Syndrom Deutschland e.V., Skye Wellesley Foundation (UK) and American organizations, The Kate Foundation for Rett Syndrome Research, Girl Power 2 Cure, Eva Fini Fund at RSRT, Rocky Mountain Rett Association and the New Jersey Rett Syndrome Association.