Tennessee

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

Jaimie Patrick, volunteer Family Empowerment Representative
jcwall22@gmail.com 1-515-297-4755

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

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. 

Visit Rett Syndrome and Related Disorders Research Program/ Vanderbilt Website
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.comNearby hotels include: Nashville Marriott at Vanderbilt University and Courtyard Nashville Vanderbilt/West End.

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.

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

Clinics

Vanderbilt University Medical Center

Visit the Vanderbilt University Medical Center website
Drs. Cary Fu and Sarika Peters
Rett Syndrome and Related Disorders research program
Jeffrey L. Neul, MD, PhD, Director, Vanderbilt Kennedy Center
One Magnolia Circle
Nashville, TN 37203
Contact: Sarika Peters, PhD
sarika.u.peters@vanderbilt.edu
Phone: 615-875-9311

State Agencies & Resources

Local Service Agencies

Department of Intellectual and Developmental Disabilities (DIDD)

Visit Department of Intellectual and Developmental Disabilities (DIDD) Website
1-615-532-6530

The Dream Factory

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.

Conservatorship

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

Recreation

Accessible Playgrounds

View Accessible Playgrounds

State Park ADA Features

Visit State Park ADA Features Website
1-615-532-0059
A guide of ADA features at each state park. For comments, requests and questions, contact Isaac Okoreeh-Baah.

Dollywood

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

Additional Resources

Tennessee Rettsyndrome.org Families Facebook page

Click and ask to join!

Tennessee Technology Access Program (TTAP)

Visit Tennessee Technology Access Program (TTAP) Website
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.

Tennessee Disability Pathfinder

Visit Tennessee Disability Pathfinder Website
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.