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
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.
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
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 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
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
State Park ADA Features
Tennessee IRSF Families Facebook page
Tennessee Technology Access Program (TTAP)
Tennessee Disability Pathfinder
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.