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.
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 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,
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 [email protected]. 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 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
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.