One of the most valuable resources for families dealing with Rett Syndrome is the International Rett Syndrome Foundation. The organization is relatively new, and was developed in response to a lack of resources for this rare condition.
The International Rett Syndrome Foundation
Founded in July of 2007, the International Rett Syndrome Foundation (IRSF) emerged when the Rett Syndrome Research Fund (RSRF) and the International Rett Syndrome Association (IRSA) merged.
The RSRF was created in 1999 with a focus on finding treatments and possible cures for Rett syndrome, and the organization made great strides in biomedical research. Among the contributions the RSRF has made is the discovery that many Rett syndrome symptoms may be reversed in the future.
Kathy Hunter created the IRSA along with other parents of children with Rett. The goals of this organization were to increase awareness, to provide guidance for families, and to fund research. A major contribution from this organization is the discovery that the MECP2 gene causes the autism spectrum disorder.
The merging of these two entities into the International Rett Syndrome foundation brings together resources in a concentrated effort. This is a critical aspect of the organization since the pervasive developmental disorder is such a rare condition. The IRSF serves as a unified community that draws its valuable resources into a single entity.
The mission of the IRSF is multi-faceted and it involves various aspects of the challenges researchers, professionals and families face when dealing with the rare developmental disorder. The primary mission is to:
- Fund research for treatments
- Fund research for a cure
- Improve the lives of those affected by Rett syndrome
- Provide information about the condition
- Offer services and programs for families
The mission may be accomplished through the various components of the IRSF:
- Fund research
- Develop research programs
- Connect families with information and programs
- Promote awareness
The IRSF is a nonprofit organization that serves as the biggest source of funding for clinical and biomedical research on Rett, with over 95 percent of its contributions going directly to the program. The organization seeks to improve research on this rare condition by:
- Raising awareness
- Increasing research
- Developing advocacy services
- Proving support for families
- Bringing together teachers, families, researchers, doctors and other members of the Rett community through the IRSF Conference held annually
- Publishing the most current information about Rett syndrome in print, online and through the mainstream media
- Providing an international database for doctors, families and people diagnosed with Rett syndrome
While clinical and biomedical research is of great focus for the organization, the IRSF also seeks to translate clinical discoveries into practical application in treatments for the disorder.
Dealing with Rett syndrome is extremely difficult for many reasons. The symptoms of the disorder may be very severe and parents may feel isolated because the condition is so rare. The foundation is a valuable resource that brings people together for a great cause.