South Carolina Resources

Family Empowerment Representatives | Treatment and Research Centers SC State Agencies | Parent Recommendations


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.

Brittney Gibson, Rettsyndrome.org  bgibsonn@rettsyndrome.org  1-800-818-7388

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


Treatment and Research Centers


Clinics & Clinical Trials

Please contact the trial site 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.

Greenwood Genetic Center

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

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 - South Carolina


Local Service Agencies

South Carolina Department of Disability and Special Needs (DDSN)

1-800-367-4636

DDSN is the state agency that plans, develops, coordinates and funds services for South Carolinians with severe, lifelong disabilities.

DDSN Provider/Service Directory


Handicap Placard

SC MVD

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.


State Medicaid 

Medicaid Waivers Info

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

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

Community Supports Waiver (CSW)

1-800-289-7012

The CSW provides services for persons with an intellectual disability. If the recipient is a minor, this waiver is based on the child's income only. There is a waitlist. You can apply by phone.

Apply for CSW

Medically Complex Children's Waiver (MCC)

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. 

Pervasive Developmental Disorder Program

1-800-289-7012

This waiver is for children ages 3-10 who have autism or a pervasive developmental disorder. Call to apply.

Intellectual Disability/Related Disability Waiver (ID/RD)

1-800-289-7012

The ID/RD waiver provides services for individuals of all ages with an intellectual or related disability. Call to apply.


Early Intervention

SC Early Intervention

There are two programs. One is for ages 0-3. The other program is for ages 3-6.

BabyNet

BabyNet is an educational program administered by FirstSteps that helps an infant or toddler with special needs move towards their full potential. This program is for children age birth through 3.

More Information

1-800-289-7012 For children ages 3-6

South Carolina Department of Education preschool program


Education

South Carolina Department of Education

A Parent Guide to Special Education Services


Conservatorship

Conservatorship is a legal proceeding in which an individual or agency (to be known as the "conservator") is appointed by a court to be responsible for a person who needs assistance in daily living. Check with your child's high school or your county Superior Court Probate Office for information on Self Help Clinics. This process should start 6 months before the 18th birthday.

Information on guardianship and conservatorship in South Carolina

 FAQ about conservatorship in South Carolina


Transition to Adult Services

South Carolina Department of Education

South Carolina Department of Education has information on transition services.

South Carolina Transition Timeline

1-866-892-9211

A helpful timeline for families to begin helping their child prepare for the future. 


Parent Recommendations

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


 Medical Professionals

ClinicalTrials.gov

This site has a comprehensive listing of clinical studies involving Rett Syndrome patients or families.


Therapy ( PT, OT, Speech, Hippotherapy and Aquatherapy)


Legal Resources

ARC of South Carolina

1-803-748-5020

The ARC of South Carolina can help empower people with disabilities make positive choices about their lives. 


Recreation


More Parent Recommendations

South Carolina Rettsyndrome.org Facebook page

Purple Ribbon Mobility

1-678-572-4410

Purple Ribbon Mobility offers brand new wheelchair conversions on  gently used Dodge Grand Caravan or Toyota Sienna mini-vans. They can convert your Dodge Grand Caravan or Toyota Sienna to be Wheelchair Accessible at a cost that is thousands less and with fewer restrictions on age and mileage of the van than traditional conversions.  Located in Georgia, providing services throughout the southeast.  purpleribbonmobility@gmail.com