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
Jessica Kiefer, volunteer Family Empowerment Representative,
[email protected] 1-678-978-1115
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.
Rett Syndrome and MECP2 Related Disorders Clinic
Center For Rare Neurological Diseases
5600 Oakbrook Parkway, Suite 120, Norcross, GA 30093
Medical Lead: Dr. Daniel Tarquinio
Primary Contacts: Gina McClain [email protected] and Alice Bruce [email protected]
Tel: 617 894 9091
Fax: 770 200 1693
State Agencies & Resources
Local Service Agencies
Children's Medical Services (CMS)
Visit Children’s Medical Services Website
CMS is a state and federally funded program which provides community-based, family-focused, care coordinated, culturally appropriate, comprehensive system of medical care for eligible children, birth to 21, with chronic medical conditions. CMS District Locations will be your beginning point of contact.
Children and Youth with Special Healthcare Needs (CYSHN)
Visit Children and Youth with Special Healthcare Needs Website
The CYSHN program’s goal is to provide resources to Georgia’s 18 Health Districts in the development of a comprehensive system of services for children and youth with special needs, birth to age 21 and their families. CYSHN services include Early Intervention (BCW) and CMS.
Parent to Parent of Georgia
Visit Parent to Parent of Georgia Website
Georgia Council on Developmental Disabilities (GCDD) considers Parent to Parent of Georgia to be the “first stop” for parents seeking resources. Parent to Parent is developing Navigator Teams, comprised of experienced parents who work with the expert staff to help guide families to the resources they need. Check with Parent to Parent to see if there is a navigator team in your county.
Visit Children 1st Website
Children 1st is designed to serve as an entry point into all public health services for children, birth to 5 years old. Children 1st facilitates early identification of at-risk children and links them with early intervention services, other public health services and community-based resources.
New Options Waiver (NOW)
Visit New Options Waiver Website
The NOW waiver program offers services and supports to individuals to enable them to remain living in their own or family home and participate or live independently in the community. Georgia has 10,000+ on waiting lists. NOW Application and FAQ’s are on the website.
Comprehensive Supports Waiver Program (COMP)
Visit Comprehensive Supports Waiver Program Website
The COMP waiver primarily provides residential care for individuals with ID/DD. These individuals require comprehensive and intensive services and need out-of-home residential support and supervision or intensive levels of in-home services. For general NOW-COMP questions, you can email [email protected].
Babies Can't Wait (BCW)
Visit Babies Can’t Wait Website
The BCW program is offered through the Georgia Department of Public Health. It provides a comprehensive, integrated system for infants and toddlers, up to age 3.
Early Intervention Program (EIP)
Visit Early Intervention Program Website
The Georgia Department of Education’s EIP program is designed to serve students who are at risk of not reaching or maintaining academic grade level. EIP provides additional instructional resources to help students who are performing below grade level obtain the necessary academic skills to reach grade level performance in the shortest possible time.
Division for Special Education Services and Supports
Visit Division for Special Education Services and Supports Website
Georgia Department of Special Education, Division for Special Education Services and Supports includes programs and services that support local school districts in their efforts to provide special education and related services to students with disabilities.
Division of Aging Services Georgia
Visit Division of Aging Services Georgia Website
DHS has information about conservatorship in Georgia. This process should be started approximately 6 months before the 18th birthday.
Guide on Conservatorship
View Guide on Conservatorship
Georgia Department of Education offers a guide on conservatorship in Georgia.
Transition to Adult Services
Georgia Department of Education
Visit Georgia Department of Education Website
The DOE has links to assist with Transition Planning. Transition requires support from multiple sources for the student and family to make choices, develop connections, and access services. Planning should begin no later than with the first IEP to be in effect when the student begins ninth grade or turns 16 (or younger if determined appropriate by the IEP team).
Georgia Partnership for Ensuring Adolescent Comprehensive Healthcare Transition (GA PEACH-T)
Visit GA PEACH-T Website
The PEACH-T website provides information on transitioning youth from pediatric to adult care.
View Disabled Persons Parking Affidavit
The DOR issues disabled plates and permits. You can apply in person from your county tag office. You will need a completed Disabled Persons Parking Affidavit signed by a physician. Handicap placards are valid for 4 years. Check with your local DOR office for renewal requirements.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Six Flags Over Georgia
Wild Adventures Theme Park
Visit Tybee Beach Website
Tybee Beach supplies mobi-mats at several locations for hassle-free handicap access. Mobi-mats are located at: Gulick Street, East Gate (2nd Street & Solomon) and 18th Street. Limited wheelchairs are also available at the lifeguard trailer at Tybee Island Marine Science Center behind the Pier.
Georgia Wheelchair Accessible Trails
The Health Law Partnership (HeLP)
Friends of disabled adults and children (FODAC)
FOCUS & Fragile Kids
Medically Complex Care Program
Purple Ribbon Mobility
Visit Purple Ribbon Mobility Website
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. Email [email protected].