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
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.
State Agencies & Resources
Local Service Agencies
West Virginia Department of Health and Human Resources (WVDHHR)
Children with Disabilities Community Service Program Waiver (CDCSP)
Children with Disabilities Community Service Program Waiver (CDCSP) CDCSP is a waiver that provides benefits to severely disabled children up to age 18 who qualify. For more information or to apply, call Program Manager, Taniua R. Hardy.
Intellectual and Developmental Disabilities Waiver (IDDW)
IDDW provides services that instruct, train, support, supervise, and assist individuals who have intellectual disabilities and/or developmental disabilities in achieving the highest level of independence and self-sufficiency possible in their lives. For more information or to apply, call Program Manager, Taniua R. Hardy.
West Virginia Birth to Three Program (WVBTT)
WVBTT is a statewide system of services and supports for children under age three who have a delay in their development, or may be at risk of having a delay, and their family. To refer your child, complete the WVBTT Referral Form and forward to the office that services your child’s location or call.
Online Conservatorship Tutorial
Transition to Adult Services
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to firstname.lastname@example.org.
Legal Resources & Information
West Virginia Rettsyndrome.org Families Facebook page