Rett Syndrome is a neurodevelopmental disorder which occurs almost exclusively in females following apparently normal development for the first six months of life. Typically, between 6 to 18 months of age, the girls experience a period of rapid decline with loss of purposeful hand use and spoken communication. Many of the girls have recurrent seizures. They experience a variety of motor problems including increased muscle tone (spasticity) and abnormal movements. They are never able to provide for their own needs. It is not a rare disorder and is believed to be second only to Down Syndrome as a cause of chronic neurological problems that include severe communication, motor disabilities and epilepsy in females.
The Center provides care, education and research. Over 800 girls and women have been seen since 1985. The comprehensive program of care provided by The Blue Bird Circle Rett Center has changed the natural history of this disorder by extending the life expectancy and improving the quality of life for these individuals. The ultimate goal of research is to seek a cure and improve the quality of life for patients and families.
We are one of the largest Rett Centers in the country and unique in how we include other disciplines (GI, Nutrition, Physical Medicine & Rehabilitation, Pulmonary, Spine surgeon, Anesthesiology) associated with the disorder to create a team approach.
Our center has been toured and used as a prototype for several clinics that have recently sprung up around the U.S. (ie: Katie’s Clinic at Oakland Children’s Hospital). Our families come, not only from all across the United States, but also from across the globe. We provide information to insurance providers around the country, to consulates for visas, and to immigration officials for families wishing to extend their stay.
Each Memorial Day weekend, part or all of our team, including Dr. Daniel Glaze, Dr. Jeffrey Nuel, Dr. K. Motil (NGI), Dr. Aloysia Schwabe (PM&R), and Judy Barrish, RN speak at the International Rett Syndrome Foundation (IRSF) Annual Family Conference.
With the support of the Blue Birds, the Texas Regional Representatives of IRSF hold an annual Rett Camp at the Gordon Ranch in Richmond, Texas early each spring. The members of the extended Rett team speak on their specialty. Additionally, they participate in an open forum Question and Answer session to provide families the answers they need to care for their girls and women. This program has become so successful in getting information to families that it has become the model for regionalized programs across the country.
As a major center for this disorder, we participate in several collaborative research protocols. We have traveled on weekends annually for the past 5 years to collect data for a research study, “Natural History of Rare Diseases-Rett Syndrome”, sponsored by the National Institutes of Health (NIH). The site visits include Oakland, CA, Chicago, Ill, and New Brunswick, NJ and to locations in Florida twice a year.
Dr Glaze recently attended a workshop concerning treatment including the possibility of a cure for Rett Syndrome. The workshop included members of the National Institutes of Health, Food and Drug Administration, and many scientists who specialize in the field of Rett Syndrome. There was much enthusiam generated with the hope that new treatments reversing the symptoms of Rett syndrome are on the horizon!
“The Blue Bird Circle has given a “voice” to hundreds of girls and woman with Rett syndrome. The continuing support of the Rett Center by the Blue Bird Circle has made possible care for these girls and women that has improved their health and the quality of life for them and their families. Where there was none, the Blue Bird Circle has given hope.”
Daniel G. Glaze, M.D., Medical Director
Professor, Departments of Pediatrics and Neurology
Baylor College of Medicine
Medical Director, The Blue Bird Circle Rett Center
Chief, Texas Children’s Hospital Rett Clinic