Picture A Cure Gala to raise needed funds for research at Texas Children’s Hospital

THE WOODLANDS, Texas – The International Rett Syndrome Foundation (IRSF), along with IRSF Board member and Woodlands resident and Rett parent Kenna Seiler are hosting the inaugural Picture A Cure Gala on July 12 from 6:30 pm to 11 pm at The Woodlands Waterway Marriott. Tickets and table sponsorships are still available for this event featuring music from country superstar Collin Raye.

All proceeds from the Picture A Cure Gala will support clinical research and treatments for Rett syndrome.

To date, approximately 4,000 cases of Rett syndrome have been diagnosed in the United States. Texas Children’s Hospital serves as a major center for the diagnosis and care of children diagnosed with Rett syndrome. Judy Barrish, RN with the Blue Bird Circle Rett Center at Texas Children’s Hospital discussed the importance of funding for clinical research for Rett syndrome. Rett syndrome is caused by a mutation on the MECP2 gene on the X chromosome. This diagnosis is made through a clinical evaluation. “Rett syndrome has often been misdiagnosed as autism or cerebral palsy,” said Barrish. “Before the discovery of the MECP2 gene mutation, researchers had little to guide them in the search for successful treatment of this disorder.”

This rare and severe disorder usually affects females. Barrish added that the gene mutation also targets a variety of everyday functions including speech, motor skills, breathing patterns, cardiac function, chewing, swallowing and digestion. It is estimated that 70% of these girls will develop seizures at some point in their lives. Patients demonstrate a wide range of impairment from mild disabilities to a complete loss of motor skills, stated Barrish.

Seiler’s own ten year old daughter Rachael was diagnosed with Rett at 22 months. Today, she cannot walk or talk and has no use of her arms or her hands. Seiler said, “As a parent, it is devastating to learn that your child has been diagnosed with a rare disease. It’s even more devastating to know that there is no cure.” After Seiler’s daughter Rachael was diagnosed, she turned to the IRSF for information, support and most importantly hope. The IRSF provides resources, materials and education not only for the person diagnosed with Rett syndrome, but also for their families. IRSF raises approximately $5 million each year. These donations have helped fund the research at Texas Children’s Hospital in association with Baylor College of Medicine in Houston, TX, where the genetic mutation that causes Rett syndrome was identified.

According to Seiler, the symptoms of this disorder have been reversed in mice, which is highly promising. Recently, the Food and Drug Administration (FDA) approved clinical research trials that will take place at Texas Children’s Hospital, providing another glimmer of hope. All proceeds from the Picture A Cure Gala will support this latest clinical research.

Tickets and sponsorship packages for the 2014 Picture A Cure inaugural gala are still available starting at $200 per ticket. For event sponsorship and underwriting information or to make a donation, please visit the link provided below.

The core mission of the IRSF is to fund research for treatments and a cure for Rett syndrome. The IRSF has earned Charity Navigator’s most prestigious 4-star rating, the highest possible rating. For more information on Rett syndrome, visit www.rettsyndrome.org.