The International Rett Syndrome Foundation

To fund research for treatments and a cure for Rett syndrome while enhancing the overall quality of life
for those living with Rett syndrome by providing information, programs and services.

IRSF Info, News and Events:
http://www.rettsyndrome.org/index.php?option=com_content&task=blogcatego...

The International Rett Syndrome Foundation (IRSF) was formed on July 1st, 2007 when the International Rett Syndrome Association (IRSA) and the Rett Syndrome Research Fund (RSRF) consolidated resources in a historic merger.

The International Rett Syndrome Association was formed in 1984 when a determined group of parents (led by Kathy Hunter) banned together to try to fund research for cures and treatments, support other families with Rett syndrome, and raise public awareness. Over the years the organization raised tremendous public awareness, brought life-changing care to families, and helped foster and fund some significant research breakthroughs (including the discovery of the MECP2 gene that causes Rett syndrome).

The Rett Syndrome Research Foundation was formed in 1999 by a passionate group of parents who wanted to more aggressively and exclusively pursue biomedical research to accelerate the discovery of treatments and a cure. Their achievements in funding new research, bolstering strategic studies, unifying and focusing the research community, and expanding the scope of knowledge was unsurpassed (including the discovery that the most symptoms of Rett syndrome may one day be reversed).

Both organizations had a proud and illustrious history of making significant progress towards bringing answers, insight, and care for loved ones with Rett syndrome; however, although both organizations were fighting for the same cause there were sometimes redundancies and challenges in creating unity with all the communities.

It became clear that, since Rett syndrome is such a rare disorder and that resources were limited, a more unified effort to the challenges was the wiser and more strategic course of action. In other words, by working together the community could get more done in less time. This philosophy spurred the leaders of both organizations to come together and discuss the potential of a single, unified organization.

It was quickly apparent that, at their core, both sides shared a similar mission: curing Rett syndrome and helping improved those living with Rett syndrome’s overall quality of life.

The response from the Rett syndrome community was overwhelmingly positive and supportive.

The International Rett Syndrome Foundation (IRSF) is a 501(c)(3) non-profit corporation established in July 2007 through the strategic merger of the Rett Syndrome Research Foundation and the International Rett Syndrome Association.

IRSF is the largest private source of funds for biomedical and clinical research on Rett syndrome. The Foundation directs 96% of each dollar donated directly to program services. All donations specifically earmarked for research will be honored.

IRSF believes the fastest way to a cure and treatments includes making significant and strategic investments in Research while bolstering Family Support, Public Awareness, and Advocacy programs.

The goal of IRSF is to not only fund the highest quality research, but also to focus on projects that will accelerate the speed with which basic science discoveries are translated into clinical application for patients with Rett syndrome.IRSF organizes and sponsors the annual Rett Syndrome Symposium which gathers researchers and clinicians from around the world to exchange the latest information and set new research directions.

IRSF organizes and sponsors the annual International Rett Syndrome Foundation Conference which provides continuing educational opportunities and connections to parents, family members, therapists, teachers, physicians and other individuals involved in the day-to-day care of individuals with Rett syndrome. Each year the Conference is held in different parts of the U.S.

IRSF publishes a variety of print, online, and media materials aimed to help provide the best and most current information to families and extended caretakers of loved ones living with Rett syndrome.

IRSF maintains not only a database of individuals with Rett syndrome, but also of physicians familiar with the disorder. From this international database, IRSF is capable of projecting accurate statistics, patient referral and family networking.