WELCOME Back a Leading Board Member

July 24, 2014

Rettsyndrome.org is proud to welcome long time Board of Directors member, Gordon (Gordy) Rich, back to the Rettsyndrome.org Board of Trustees.

Gordy, with the support of his wife Anne, created the Kelly Rich Rett Research Foundation in 1997 for their daughter Kelly, who had just been diagnosed with Rett syndrome as well as funding the formation of the Kelly O’Leary Center for Pervasive Developmental Disorders at Cincinnati children’s Hospital. Kelly was diagnosed with Rett syndrome at Johns Hopkins Kennedy Krieger in 1997 at the age of 20 months.

In November of 1999, The Rett Syndrome Research Foundation (RSRF) was formed by a passionate group of parents, led by Gordy, who wanted to more aggressively pursue biomedical research to accelerate the discovery of treatments and a cure. In its first year the foundation funded over $1M in research grants. Their achievements in funding new research and expanding the scope of knowledge was unsurpassed (including the discovery that most symptoms of Rett syndrome may one day be reversed).

In 2007 RSRF joined forces with The International Rett Syndrome Association (IRSA) to form the International Rett Syndrome Foundation (IRSF), which today is known as Rettsyndrome.org.

Even after his term ended, Gordy continued to play a key role in the foundation’s fundraising efforts. With the Rettsyndrome.org headquarters located at Reading Rock, a family run company where Gordy is President, the employees of Reading Rock have played an important role in supporting the foundation through various fundraisers; one huge undertaking being the Tri-State Strollathon. The Strollathon program, Rettsyndrome.org’s signature fundraising event, raised over $8 million in the first ten years. The Tri-State Strollathon has totaled over $1,798,646 making it the foundation’s most successful strollathon since inception.

After four years, Gordy has decided to add Rettsyndrome.org board membership back to his mission. “Before Kelly was even diagnosed with Rett syndrome, I knew I needed to be a part of the cure for whatever my daughter had. Once we had the diagnosis, I knew that I needed to step up to raise the funds needed for treatments and a cure. I gave 100% before my leave and plan to give 110% now that I’m back."

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