Texas Resources

Family Empowerment Representatives  | Treatment and Research Centers | TX State Agencies | Parent Recommendations


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.

Brittney Gibson, Rettsyndrome.org  bgibson@rettsyndrome.org  1-800-818-7388

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

Amber Weigl, volunteer Family Empowerment Representative, Austin   amberweigl@gmail.com 1-512-497-4486

Chasity Shifflett, volunteer Family Empowerment Representative, Burnet    Chas08_90@yahoo.com 1-254-383-2174


Treatment and Research Centers


Clinics

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

  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. 

 Clinical Trials

Please contact the trial site 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  

 

 

 

 

 

 

Evaluation of the Efficacy, Safety, and Tolerability of Sarizotan in Rett Syndrome With Respiratory Symptoms

 

 

 

 

 

This study evaluates the safety, tolerability and efficacy of Sarizotan in reducing respiratory abnormalities in Rett syndrome.  Eligibility criteria include girls or boys age 13 or above.

 Baylor College of Medicine, Texas Children's Hospital

1-832-824-3634&nbsp

For information on this study, please contact Mohammad Naqvi at Mohammad.Naqvi@bcm.edu

 

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 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.


State Agencies -Texas


Local Service Agencies

 Texas Department of Aging and Disability Services (DADS)

1-855-937-2372

DADS administers 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

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 In Home and Family Support Program

This program provides direct grants and services to families with a disabled individual to help the individual remain in the home. It can also help with minor home modifications and equipment that is not available through any other programs. Your child must be 4 to apply.

The Home and Community-Based Serves(HCS)

This program provides services and supports to people with intellectual disabilities who are living with their families, in their own homes or in other community settings. The local authority provides service coordination. HCS retains the client as long as they live in Texas. There is a waiting list to get on HCS.

The Children with Special Health Care Needs Services Program (CSHCN)

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. 


Handicap Placard

Texas DMV

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.


State Medicaid 

Medicaid for Children with Disabilities

1-877-742-8844

This site provides a general overview of Medicaid for children with disabilities with a focus on long term care benefits, as well as information on Medicaid services and programs specific to Texas.   

Early Childhood Intervention (ECI)

1-800-628-5115

ECI is a program for families with children, birth to three, with disabilities and developmental delays. Services are provided by a variety of local agencies and organizations across Texas.  


Early Intervention

Texas Education Agency

This site lists Information on special education services for children ages 3-5.


Education

Texas Education Agency

 This site also lists information on special education services for children ages 5-21.


Conservatorship

Texas Department of Aging and Disability Services (DADS)

DADS has information to help families through the process of gaining conservatorship, or guardianship, for their child. 


Transition to Adult Services

Community Living Assistance and Support Services (CLASS)

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.


Parent Recommendations

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


 Medical Professionals

Clinicaltrials.gov

This site has a comprehensive listing of clinical studies involving Rett Syndrome patients or families.


Therapy ( PT, OT, Speech, Hippotherapy and Aquatherapy)

American Hippotherapy Association

Texas Horseman's Directory

Texas Health Presbyterian Hospital Plano

This hospital has a pediatric aquatic therapy program.

Texas Children's Hospital's Aquatic Program

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.


Legal Resources


Recreation

Morgan's Wonderland, San Antonio

Texas Parks and Wildlife

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

Let Kids Play

This site lists accessible playgrounds in Texas.

Six Flags Fiesta Texas

Six Flags Over Texas

Six Flags Hurricane Harbor


More Parent Recommendations

Courtsystem.org

This site has a database of contact info for all emergency, legal, and government offices in each state.  The Texas page has proven valuable to parents in providing current information.

Texas Rettsyndrome.org Facebook Page

 Click and ask to join this page.

IRSF Central Texas Strollathon Facebook Page

Specialized Telecommunications Assistance Program (STAP)

STAP is a voucher program that provides financial assistance to Texans with disabilities for the purchase of specialized assistive equipment or services. To be eligible you must complete the Application for STAP or a DARS3907(available online), provide Texas proof of residency, and have the application certified by an approved medical professional. It can take up to 90 days before an application is processed. Once your application is approved, a voucher is issued and must be exchanged with one of the vendors registered with this program. The list of vendors can be found online.  Only STAP registered vendors can exchange a voucher. Not all vendors sell all equipment.