Family Empowerment Representatives
Family Empowerment Representatives are volunteers who provide emotional support, information and resources to families affected by Rett syndrome. Contacting them should be your first step.
National Family Empowerment Representative
Samantha Brant – Family & Community Engagement Manager, International Rett Syndrome Foundation
[email protected] 1-913-221-8157
Treatment and Research Centers
Your child may be able to participate in studies and trials to advance treatment and knowledge of Rett syndrome. There are clinics specializing in Rett syndrome that can help you provide Rett-specific care for your child.
Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.
Natural History Study
Travel Assistance for NHS Sites – 1-781-333-1593
Marriott is working on establishing discounts for hotel near our clinical trial sites. For more information, contact Ashley Lucchese, Marriott Sales Executive [email protected] Nearby hotels include: Houston Marriott Medical Center & Residence Inn Houston Medical Center/NRG Park.
Biobanking of Rett Syndrome and Related Disorders
The purpose of this study is to advance understanding of the natural history of Rett syndrome (RTT), MECP2-duplication disorder (MECP2 Dup), RTT-related disorders including CDKL5, FOXG1, and individuals with MECP2 mutations who do not have RTT. Samples with DNA will be collected. Baylor College of Medicine For more information, contact Jackie Soto [email protected], 1-832-822-1781.
Texas Children's Hospital (Blue Bird Circle Rett Center)
Visit Texas Children’s Hospital (Blue Bird Circle Rett Center) Website
Located in Texas Children’s Hospital, the center specializes in the care of patients with Rett syndrome. An appointment includes a comprehensive, multidisciplinary evaluation. Specialists are available to evaluate problems such as scoliosis, chewing/swallowing dysfunction, failure to thrive, gastroesophageal reflux and motor dysfunction.
State Agencies & Resources
Local Service Agencies
Texas Department of Aging and Disability Services (DADS)
Your Texas Benefits
If you want to find out which services you might be eligible for, visit the Your Texas Benefits website and click on the “Should I apply” link. This website determines which health and human services programs you might qualify for.
The Children with Special Health Care Needs Services Program (CSHCN)
CSHCN helps with medical, dental, mental health care, drugs, special therapies, case management, family support services, travel to health care visits and insurance premiums. It is available to any Texas resident who is under 21 years old, has a certain level of family income, and has a medical problem expected to last at least 12 months and to limit one or more major life activities. The program does not cover clients with only a mental, behavioral or emotional condition, or a delay in development. All applicants must also apply for the Children’s Health Insurance Program (CHIP) and Medicaid. You may apply to the CSHCN Services Program year-round.
Destination DFW- Special Needs Resources
The Dream Factory of San Antonio
The Dream Factory is the largest children’s wish-granting organization that does not limit its mission to children who have life-threatening illness. The organization believes children with chronic illnesses and disorders also suffer from substantial emotional and physical pain.
Transition to Adult Services
Community Living Assistance and Support Services (CLASS)
This program provides home and community-based services as a cost-effective alternative to an intermediate care facility. It serves individuals with an intellectual disability or related condition that originated before age 22 and affects their ability to function in daily life.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].