Tennessee Resources

Family Empowerment Representatives | Treatment and Research Centers | TN 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


Treatment and Research Centers


Clinics & Clinical Trials

Please contact the trial site for current enrollment status.

 Natural History Study

The objective of this study is to gather as much data as possible about children and adults with Rett syndrome. This includes information about nutrition, development, and height & weight measurements. This data will stimulate more clinical research and better prepare us for future clinical trials. 

Rett Syndrome and Related Disorders Research Program/ Vanderbilt

1-615-322-9410

Rett Syndrome and Related Disorders Research Program is located at Vanderbilt Kennedy Center for Research on Human Development in Nashville by Dr. Cary Fu and Dr. Sarika Peters. For more information, contact Sarika Peters, PhD,  sarika.u.peters@vanderbilt.edu

Travel Assistance for NHS Sites

1-781-333-1593

Marriott is working on establishing discounts for hotels near our clinical trial sites.  For more information, contact Ashley Lucchese, Marriott Sales Executive  Ashley.Lucchese@Marriott.com 

Nearby hotels include: Nashville Marriott at Vanderbilt University and Courtyard Nashville Vanderbilt/West End

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.

Vanderbilt University

For more information, contact Pranathi Matta  pranthi.matta@Vanderbilt.edu.


 State Agencies - Tennessee


Local Service Agencies

Department of Intellectual and Developmental Disabilities (DIDD)

1-615-532-6530

DIDD Regional Offices

Disability Determination Services (DDS)

1-800-342-1117

DDS processes claims for Social Security and Supplemental Security Income (SSI) disability claims. 


Handicap Placard

Tennessee Department of Revenue

TN Department of Revenue issues handicap placards. Complete the Application for Disabled Person License Plate, Placard, and/or Decal and obtain certification from a physician. Both forms can be submitted to your local county clerk.


State Medicaid 

Self Determination Waiver Program

1-800-535-9725

Self Determination Waiver Program provides services to children and adults with developmental and intellectual disabilities. To apply, call  DIDD.

Statewide HCBS Waiver

1-800-535-9725

Statewide HCBS Waiver provides services for children and adults with a diagnosed intellectual or developmental disability. To apply, call DIDD.


Early Intervention

Tennessee Early Intervention System (TEIS)

1-800-852-7157

Tennessee Early Intervention System (TEIS) TEIS is a voluntary educational program for children birth to age 2 with disabilities or developmental delay. You can refer your child to TEIS by calling or by calling a Single Point of Entry Office (SPEO) listed on the TEIS page.


Education

Tennessee Department of Education

1-615-741-5158

Tennessee Department of Education provides educational services and programs for all students with special educational needs.

Evaluation and Eligibility Information for special education services

Special Education Tools and Resources 


Conservatorship

Conservatorship is a legal proceeding in which an individual or agency (to be known as the "conservator") is appointed by a court to be responsible for a person who needs assistance in daily living. Check with your child's high school or your county Superior Court Probate Office for information on Self Help Clinics. This process should start 6 months before the 18th birthday.

Conservatorship Handbook


Transition to Adult Services

Special Education Secondary Transition

Special Education Secondary Transition offers information on a successful transition to adult services.


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)


Legal Resources


Recreation

Accessible Playgrounds

State Park ADA Features

1-615-532-0059

A guide of ADA features at each state park. For comments, requests and questions, contact Isaac Okoreeh-Baah.

Dollywood

Dollywood has a Ride Accessibility Center available to serve guests with accessibility needs.


More Parent Recommendations

Tennessee Rettsyndrome.org Families Facebook page

Click and ask to join!

Tennessee Technology Access Program (TTAP)

1-615-313-5183

TTAP is a statewide program designed to increase access to, and acquisition of, assistive technology devices and services. 1-615-313-5183

TTAP Core Programs

TTAP Core Programs offers explanations of funding assistance, device demonstration, device loan and device reutilization offered through TTAP.

 TTAP Centers

Tennessee Disability Pathfinder

1-800-640-4636

Pathfinder provides free information, resources, support, and referrals to Tennesseans with disabilities and their families. They provide information and resources to individuals of all ages, all types of disabilities, and languages spoken. Through a helpline and online database, they connect individuals with disabilities, their families, caregivers, and service providers to appropriate community resources. Their staff includes professionals, family members, and/or individuals with disabilities that have many years of experience working in the disability field.