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

Family Empowerment Representative

Jaimie Patrick, volunteer Family Empowerment Representative
[email protected] 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.

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  [email protected].


Vanderbilt University Medical Center/Vanderbilt Kennedy Center

Clinic Name: Vanderbilt Rett Syndrome Clinic
Medical Directors: Cary Fu, MD & Jeff Neul, MD, PhD
Clinic Address: 2200 Children’s Way, Doctors Office Tower, 9th Floor, Nashville, TN 37232
Clinic Phone: (615) 936-5536
Clinic Email: [email protected]
Part of the IRSF Center of Excellence Network


State Agencies & Resources

Local Service Agencies

Department of Intellectual and Developmental Disabilities (DIDD)

Visit Department of Intellectual and Developmental Disabilities (DIDD) Website

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.


If you have favorite resources to share with others, please email that information and your experience to [email protected].


Accessible Playgrounds

View Accessible Playgrounds

State Park ADA Features

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


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

Additional Resources

Tennessee IRSF Families Facebook page

Click and ask to join!

Tennessee Technology Access Program (TTAP)

Visit Tennessee Technology Access Program (TTAP) Website
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
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.