South Carolina
- Family Empowerment Representatives
- Treatment and Research Centers
- State Agencies & Resources
- Parent Recommended Resources
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
Family Empowerment Representative
Hollis Gunn, volunteer Family Empowerment Representative, Mount Pleasant
[email protected] 1-843-847-1248
Tonya Hanna, volunteer Family Empowerment Representative
[email protected] 1-864-848-1323
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.
Clinical Trials
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
Visit Biobanking of Rett Syndrome and Related Disorders Website
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.
Greenwood Genetic Center – 1-888-442-4363
For study information, call or email Fran Annese [email protected].
Clinics
Greenwood Genetic Center
Medical Director: Steve Skinner, MD
Clinic Address: 106 Gregor Mendel Circle, Greenwood, SC 29646
Clinic Phone: (864) 941-8100
Part of the IRSF Center of Excellence Network
State Agencies & Resources
Local Service Agencies
DDSN Provider/Service Directory
State Medicaid
Medicaid Waivers Info
Visit Medicaid Waivers Info Website
For Medicaid Waivers information, contact the Department of Disability and Special Needs. There are departments for children age 0-3 (Baby Care Line) and another for ages 3 and up.
Katie Beckett TEFRA Children Waiver
Visit Katie Beckett TEFRA Children Waiver Website
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.
Healthy Connections online application
Additional forms for TEFRA
Medically Complex Children's Waiver (MCC)
Visit Medically Complex Children’s Waiver (MCC) Website
1-803-898-2577 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.
Early Intervention
Department of Education Preschool Program
1-800-289-7012 – For children ages 3-6
Visit South Carolina Department of Education preschool program Website
Education
South Carolina Department of Education
A Parent Guide to Special Education Services
Conservatorship
Information on guardianship and conservatorship in South Carolina
Visit Information on guardianship and conservatorship in South Carolina Website
Transition to Adult Services
South Carolina Department of Education
Visit South Carolina Department of Education Website
South Carolina Department of Education has information on transition services.
South Carolina Transition Timeline
Visit South Carolina Transition Timeline Website
1-866-892-9211
A helpful timeline for families to begin helping their child prepare for the future.
Handicap Placard
SC MVD
Visit SC MVD Website
Apply for handicap placards at your municipality or the city closest to you. Complete an application for a disabled parking placard. Fill it out with your child’s doctor and return the application to get your placard. You can also contact the MVD of S. Carolina.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Legal Resources & Information
ARC of South Carolina
Visit ARC of South Carolina Website
1-803-748-5020
The ARC of South Carolina can help empower people with disabilities make positive choices about their lives.
Additional Resources
South Carolina IRSF Facebook page
Visit South Carolina International Rett Syndrome Foundation Facebook page