About RSRF
Table of Contents
Introduction to RSRF
The RSRF was founded in late 1999 by a small but passionate group of parents who were concerned by the lack of research being conducted on Rett Syndrome. These parents were confident that an organization focused aggressively on biomedical research would accelerate the discovery of treatments and a cure for this devastating disorder.
In our short history, RSRF has emerged as the leader in identifying promising scientific approaches to understanding RTT. RSRF goes beyond "science as usual" by identifying knowledge gaps, taking calculated risks, speeding resources to scientists and forging relationships.
As a volunteer-driven organization which has raised millions, RSRF has proven to be fiscally responsible, with 97% of each dollar donated channeled directly to program services. RSRF’s sound fiscal management was rewarded with the coveted 4-Star rating from Charity Navigator, America’s premier evaluator of not-for-profit organizations.
So just what does RSRF do?
Fund Research – Today, RSRF is the world's leading private source of funds for RTT research.
Our hands-on approach has resulted in the recruitment of world-class scientific talent and the procurement of historic results. Yet, we are mindful that we do not exist to fund research for research sake but to find treatments and a cure for Rett. Our funding decisions are guided by our esteemed Scientific Advisory Board who ensures that only meritorious projects are funded. Our website lists every project ever funded along with progress reports.
Organize RTT Symposium – RSRF convenes, each June, the premier meeting on RTT. For three days the world’s leading researchers and clinicians gather for open-minded discussions about data that has not yet been published in scientific journals. During this meeting research direction for the near future is set. To view agendas, summaries and pictures of past meetings please visit our website.
Host Think Tanks – RSRF hosts intimate meetings of a more focused nature aimed at identifying knowledge gaps in the current research and addressing how to fill them.
Facilitate the sharing of scientific tools – Scientists need certain tools (called reagents) to perform experiments. Rather then have each laboratory reinvent the wheel RSRF catalyzes the sharing of important reagents. RSRF has also helped to fund the colonization of the mouse models which are now being used in hundreds of labs worldwide.
Outreach to the scientific community – RSRF networks with researchers around the world via meetings, mailings, website, RTTNews listserv, newsletters. Furthermore, the efforts of non-Rett labs are monitored on an ongoing basis to identify and recruit investigators into the RTT field.
Family Support – RSRF provides families with the latest news via website, RSRFNewsAlert, newsletters and mailings. State of the Research Presentations organized by RSRF and presented by some of the world’s leading RTT researchers bring the latest news to families. We liaison between researchers and families with regards to clinical trials, studies, biological samples and interesting clinical cases. We provide families with contact information for local families and clinicians.
URGENCY * PASSION * HOPE
How Can I Help?
Coming to terms with the fact your child is severely disabled is likely the most difficult challenge any parent will ever face. Getting involved, in some fashion, provides a way for many parents to tangibly influence the future of their own child as well as affected children all over the world.
There are many ways to become involved and help the Rett community at large. Below are some ideas. We welcome your unique idea.
Raise research dollars
- Spearhead your own event
- Support an existing event
- Launch a letter writing campaign
For inspiration and information visit the RSRF website.
Raise awareness
- Contact your local newspaper(s) and TV stations and suggest a story on RTT.
- Write an article on RTT for your school or company newsletters.
We can provide talking points. Contact us.
Help drive the research
- Participate in clinical studies/trials/mutation databases
- Arrange with RSRF to visit the labs of local RTT scientists
- Advocate for increased NIH funding by participating in the Call To Action emails from the RSRFNewsAlert listserv
- Ask your child’s doctors if they’d like to be added to our mailing list
- Stay up to date with RTT research developments
Assess your talents and connections
Are you a writer, photographer, graphic artist, do you have marketing/PR skills? Do you know any celebrities? Do you know someone who works for a national media company? Would your company consider sponsoring one of our fundraising events? If you answered yes to any of these questions you could be of invaluable help. Let us know.
