Texas

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, Rettsyndrome.org
sbrant@rettsyndrome.org  1-913-221-8157

Family Empowerment Representative

Vanessa Peace, volunteer Family Empowerment RepresentativeCarrolton
vanessa.ella.peace@gmail.com 1-972-977-5021

Denay Hooks, volunteer Family Empowerment Representative
denayhooks@outlook.com 1-325-650-2408

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.

Clinical Trials

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

Baylor College of Medicine, Texas Children’s Hospital
1-832-822-1260
The study is led by Dr Daniel Glaze.  For more information on the NHS Study, contact Study Coordinator Jacqueline Soto at jxsoto@texaschildrens.org or call.

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 Ashley.Lucchese@Marriott.com. Nearby hotels include: Houston Marriott Medical Center & Residence Inn Houston Medical Center/NRG Park.

Biobanking of Rett Syndrome and Related Disorders

Visit Biobanking of Rett Syndrome and Related Disorders Website
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 jg20@bcm.edu, 1-832-822-1781.

Baylor College of Medicine, Texas Children’s Hospital
1-832-822-1781
For information on this study, please contact Jackie Soto jg20@bcm.edu or call.

Clinics

Texas Children's Hospital (Blue Bird Circle Rett Center)

Visit Texas Children’s Hospital (Blue Bird Circle Rett Center) Website
1-832-822-1260
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)

Visit Texas Department of Aging and Disability Services (DADS) Website
1-855-937-2372
DADS administer long-term services and supports for people with intellectual and physical disabilities.  Begin by contacting your Local DADS office or call to get on the interest list.

Your Texas Benefits

Visit Your Texas Benefits Website
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)

Visit The Children with Special Health Care Needs Services Program (CSHCN) Website
1-800-252-8033
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

Visit Destination DFW- Special Needs Resources Website
A list of schools and resources for Dallas/Fort Worth parents.

The Dream Factory of San Antonio

Visit The Dream Factory of San Antonio Website
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)

Visit Community Living Assistance and Support Services (CLASS) Website
1-877-438-5658
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.

Handicap Placard

Texas DMV

Visit Texas DMV Website
The DMV issues disabled placards. You can apply at your local county tax assessor-collector’s office. The application is available on the DMV website. A doctor or health care provider must complete the Disability Statement section of the application.

If you have favorite resources to share with others, please email that information and your experience to areed@rettsyndrome.org.

Therapy

American Hippotherapy Association

Visit American Hippotherapy Association Website

Texas Health Presbyterian Hospital Plano

Visit Texas Health Presbyterian Hospital Plano Website
This hospital has a pediatric aquatic therapy program.

Texas Children's Hospital's Aquatic Program

Visit Texas Children’s Hospital’s Aquatic Program Website
1-832-826-2135
Located at Chancellor’s Family Center in Houston, this program offers individual and group aquatic therapy sessions. Physician referral and preauthorization are necessary. Contact Avis Rosenthal for more information.

Recreation

Morgan's Wonderland, San Antonio

Visit Morgan’s Wonderland, San Antonio Website

Texas Parks and Wildlife

Visit Texas Parks and Wildlife Website
Texas Parks lists State Parks and Historic Sites that are wheelchair accessible.

Let Kids Play

Visit Let Kids Play Website
This site lists accessible playgrounds in Texas.

Six Flags Hurricane Harbor

Visit Six Flags Hurricane Harbor Website

Additional Resources

Texas Rettsyndrome.org Facebook Page

Click and ask to join this page.