South Carolina

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
sbrant@rettsyndrome.org  1-913-221-8157

Family Empowerment Representative

Hollis Gunn, volunteer Family Empowerment Representative, Mount Pleasant
hollisgunn@msn.com 1-843-847-1248

Tonya Hanna, volunteer Family Empowerment Representative
mommiefrog2001@yahoo.com 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.

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
1-864-941-8100
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 – fran@ggc.org.

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  Ashley.Lucchese@Marriott.com. Nearby hotels include: Fairfield Inn & Suites Greenwood, Fairfield Inn & Suites Anderson Clemson.

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 fran@ggc.org.

State Agencies & Resources

Local Service Agencies

DDSN Provider/Service Directory

Visit DDSN Provider/Service Directory Website

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

Visit South Carolina Department of Education Website

A Parent Guide to Special Education Services

Visit A Parent Guide to Special Education Services Website

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.

If you have favorite resources to share with others, please email that information and your experience to areed@rettsyndrome.org.

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 Rettsyndrome.org Facebook page

Visit South Carolina Rettsyndrome.org Facebook page