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.
Visit Greenwood Genetic Center Website
The director of the Greenwood Genetic Center is Dr. Steve Skinner. The center is located at 106 Gregor Mendel Circle, Greenwood South Carolina. For more information on the study contact Fran Annese – .
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: Fairfield Inn & Suites Greenwood, Fairfield Inn & Suites Anderson Clemson.
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.
State Agencies & Resources
Local Service Agencies
Medicaid Waivers Info
Katie Beckett TEFRA Children Waiver
The Katie Beckett Waiver provides services for children under the age of 18 who would otherwise require care in an institution. The waiver only takes the child’s income into account. To apply, complete the Healthy Connections application online and then complete the additional forms for TEFRA.
Medically Complex Children's Waiver (MCC)
Intake and Referral
The MCC waiver is for Medicaid eligible children with a serious illness or condition that is expected to last at least 12 months. The illness or condition generally makes the child dependent upon comprehensive, medical, nursing and health supervision or intervention as established by state medical criteria. There is a waitlist for this waiver. Call Intake and Referral to apply.
Transition to Adult Services
South Carolina Department of Education
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].