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,  1-913-221-8157

Family Empowerment Representative

Susan Lee, volunteer Family Empowerment Representative 1-205-910-2353

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

UAB Rett Syndrome Clinic
Visit UAB Rett Syndrome Clinic Website
The UAB Rett Syndrome Clinic is located at the University of Alabama Birmingham Civitan International Research Center.  The director is Dr. Alan Percy, pediatric neurologist. For information on the clinic or NHS study, contact Jane Lane at

Travel Assistance for NHS Sites

Marriott is working on establishing discounts for hotels near our clinical trial sites.  For more information, contact Ashley Lucchese, Marriott Sales Executive

Nearby hotels include: Courtyard Birmingham Downtown at UAB and Spring Hill Suites Birmingham Downtown at UAB

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. Click here to view the study.

University of Alabama, Birmingham
For more information, please contact Jane Lane at or Dr. Alan Percy.


UAB Rett Syndrome Clinic

Visit the Rett Syndrome Clinic Website
The UAB Rett Syndrome Clinic is located at the University of Alabama Birmingham Civitan International Research Center.  The director is Dr. Alan Percy, pediatric neurologist. For information on the clinic or NHS study, contact Jane Lane at

State Agencies & Resources

Local Service Agencies

Alabama Connect

Visit the Alabama Connect Website
Alabama Connect is provided by the Alabama Department of Senior Services to assist older adults, individuals with disabilities and their family members in locating services. The site has a collection of tools, resources, and educational information. If you need more assistance, call and speak to an Area Agency on Aging representative.

Governor's Office on Disability (GOOD)

Visit the Governor’s Office on Disability (GOOD) Website
GOOD has resources and information concerning disability issues.

State Medicaid

Early Intervention

Alabama Early Intervention System

Visit the Alabama Early Intervention System Website
The EIS services children from birth to 36 months of age who have a medical diagnosis that can delay development. The sole purpose of AEIS is to get children ready to attend school.


Local School Districts

Visit the Local School Districts Website
Contact your local school district approximately 6 months before your child turns 3. The school district will start the Individualized Education Program process which will involve assessments, so they are able to place your child in a program in the district.

Alabama Special Education Services

Visit the Alabama Special Education Services Website
For information on Alabama Special Education Services contact Crystal Richardson, Special Education Services Coordinator at


Legal Counsel

Visit the UAB Law School Website
UAB Law School has a Legal Counsel page to provide information on conservatorship.

Transition to Adult Services

Local School Districts

Visit the Local School Districts Website
Transition planning must begin by the first IEP held after the student reaches age 16, or earlier. The planning ensures that the student continues to receive the support needed from the appropriate agencies. It should also address residential, social and recreational goals. This is done through your local school district.

Vocational Rehabilitation Service (VRS)

Visit the Website

VRS places substantial emphasis on assisting youth with disabilities in the transition from school to post school activities. A VR counselor works with youth and their families to assess their needs and plan individualized services to meet their chosen vocational goal.  Every public high school in Alabama has a VR counselor assigned to provide transition services.

Handicap Placard

Alabama Motor Vehicle Division

Visit the Alabama Motor Vehicle Division Website
Your local MVD office issues disability plates and placards.  You will need the completed application, which includes certification from your child’s physician and appropriate fees.

If you have favorite resources to share with others, please email that information and your experience to

Legal Resources & Information

Alabama Disabilities Advocacy Program (ADAP)

Visit the Alabama Disabilities Advocacy Program (ADAP) Website
ADAP provides legal services to Alabamians with disabilities to protect, promote and expand their rights.


Wheelchair Accessible trails

Visit the Website

Additional Resources

SRSA Facebook page

View the SRSA Facebook Page
Southeastern Rett Syndrome Alliance (SRSA) is a grassroots organization to help Rett families in the Southeastern region. Click and ask to join their page. SRSA exists to provide awareness, support and connections to those impacted by Rett Syndrome, and to expand knowledge and understanding for caregivers and professionals.

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