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
[email protected] 1-913-221-8157
Family Empowerment Representative
Caitlin Barbier, volunteer Family Empowerment Representative
[email protected] 1-910-638-8803
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
Care Coordination for Children (CC4C)
North Carolina Department of Health and Human Services
Exceptional Children's Assistance Center (ECAC)
The ECAC supports North Carolina Family Voices. NCFV advocates for health care services that are family centered. They believe that family-centered care is the philosophy of service delivery that best meets the needs of children and their families.
Local Social Services Agency
Each county in North Carolina has a Local Social Services Agency. Select your county to view phone numbers, addresses, and agency web site addresses. The North Carolina Division of Social Services works in cooperation with the Social Services Commission, the Local Social Services Agency and other public and private entities.
The Dream Factory of North Carolina
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.
North Carolina Community Alternatives Program for Children (CAP/C)
Visit North Carolina Community Alternatives Program for Children (CAP/C) Website
CAP/C is a Medicaid waiver program for children (the Katie Beckett Waiver) under the age of 20 who are medically fragile and cared for in the home. There is no income requirement. Services offered include in home care, vehicle modifications, home modifications, access to PT, OT and ST. This program is a payer of last resort so if you have private insurance, it must be billed first. To apply, contact your Local Case Management Agency.
This waiver is only available in counties where the Innovations Waiver is not available. It provides vehicle modifications, in home modifications, respite, and more services for children beginning at birth, with no maximum age. There is currently a waitlist to obtain services.
Department of Exceptional Children
The Public Schools of North Carolina Department of Exceptional Children ensures that students with disabilities develop intellectually, physically, emotionally, and vocationally through the provision of an appropriate individualized education program in the least restrictive environment.
Visit NCHHS Website
NCHSS provides information on guardianship.
Transition to Adult Services
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].