Local Fundraisers Raise Awareness of Rhett Syndrome

“Spending Time Ending Rett II” featured a flurry of fundraising efforts and celebrities.

THE WOODLANDS, Texas -- “Rett” Syndrome may not be a household word, but after a flurry of fundraising efforts this past weekend, it’s definitely been added to the community’s vocabulary. In addition to the 1st Greater Houston ‘Strollathon’ on Halloween, complete with a costume contest, a concert was hosted by country music sensation, Clint Black, and the fundraising was capped off with a charity golf tournament.

The inaugural Strollathon was held on Oct. 31, at Rob Fleming Park in The Woodlands, and coordinated by Kenna Seiler, whose 5-year old daughter is a victim of Rett Syndrome. Mrs. Texas International, Bonnie Hubert, was on hand to lend support and judge the costume contest. The event was deemed a huge success in large part to the multi-stage fundraising approach. The “Spending Time Ending Rett II” event-filled weekend included a concert following the fundraising stroll, performed by Kevin Black, Clint’s brother. Clint Black’s concert on Sunday, was held at Dosey Doe in memory of his niece, Cortney, who lost her battle with Rett syndrome in 2003, at age 16. The beautiful weather prevailed and on Monday the 6th Annual ‘Tee It Up For Rett Syndrome’ golf tournament was held at Bentwater Golf Course on Lake Conroe.

Rett syndrome (RTT) is a neurodevelopmental disorder associated primarily with mutations in a gene on the X chromosome and most people affected are girls. In the majority of cases, these mutations are in the MECP2 gene. The syndrome is named after Dr. Andreas Rett who first described the disorder in the 1960s. Spearheading the effort for a cure is the International Rett Syndrome Foundation, a merger between the International Rett Syndrome Association and the Rett Syndrome Research Foundation. The aims of IRSF are to provide an information and referral service, offer parent support through contact with other parents, and research aimed at finding the cause of RS and methods for its prevention, control and cure. To received a Rett Syndrome Information Package call The Blue Bird Circle Rett Center at 832 822-7388, toll-free at 1 888 430-7388, or email at the link below.

For more information about Rett Syndrome, please contact International Rett Syndrome Foundation at 800-818-7388 (RETT), or visit their Web site at rettsyndrome.org.

(Photo courtesy of rettsyndrome.org)