RSRF's Commitment to Research
Over $11.1 million to date
In late 1998 the founders-to-be of RSRF undertook a comprehensive analysis of the state of Rett Syndrome research. In the coming months intense networking took place with Rett researchers, prominent scientists outside the Rett field, leaders from the non-profit world, key NIH personnel and many others. Outside of the search for the "Rett gene", which had attracted several prominent scientists, very little research was taking place. The future founders of RSRF, all parents of children with Rett, were disheartened and panic stricken at learning that Rett Syndrome was basically unknown in the scientific community.
These parents decided that implementing the following strategy would stimulate interest in Rett and dramatically increase the number of people working on the disorder.
- develop a database of worldwide investigators with a potential interest in Rett
- implement an annual stringent grant review process spearheaded by a rigorous scientific advisory board
- establish a RTT tissue and blood bank which would be openly accessible to scientists worldwide
- organize and sponsor an annual Rett Syndrome scientific symposium
- facilitate the sharing of the tools required to perform Rett research
- develop an infrastructure that allows for ongoing review of any relevant research and disseminate Rett materials to appropriate researchers
Our strategy, combined with the timely discovery of the Rett gene in October of 1999, has indeed greatly contributed to the dramatic increase in the quantity and scope of Rett research.
Since its inception in the fall of 1999 RSRF has committed over $11.1 million to research through its research programs and has become the leading worldwide private funder of Rett research.
RSRF's efforts are concentrated in the following areas:
- RSRF Grant Awards provides junior and senior scientists $100,000 over 2 years to investigate Rett Syndrome research. Progress and financial reports are reviewed by our scientific advisory board every 6 months to ensure funds are wisely spent and progress is taking place.
- RSRF Post-Doctoral Fellowships of $100,000 over 2 years encourages young bright investigators to enter a career in RTT under the supervision on an established mentor.
- Grants of Excellence to Accelerate Rett Research (G.E.A.R.) was launched in January of 2004 and provides an injection of resources to labs in the Rett field with an established track record in an effort to propel research.
RSRF organizes and sponsors the only annual scientific meeting devoted exclusively to RTT. Each June about 100 researchers and clinicians from around the world gather in Baltimore for three days to exchange the latest information and set new research directions. RSRF encourages the discussion of unpublished data and the sharing of ideas to accelerate the possibility of treatments and cure.
Ongoing review of the latest developments in the field coupled with continual dialogue with Rett and non-Rett researchers assures that the foundation addresses the scientific needs with the appropriate funding mechanisms and research programs.
RSRF's goal is to not only fund the highest quality research but also focus on projects that will accelerate the speed with which basic science discoveries are translated into clinical applications for the Rett patients. Rett Syndrome must be cured.
