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
Susan Lee, volunteer Family Empowerment Representative
[email protected] 1-205-910-2353
International Rett Syndrome Foundation Alabama Families Facebook Group
Join this group for up-to-date information on local gatherings and happenings.
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.
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 [email protected] 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 [email protected].
State Agencies & Resources
Local Service Agencies
Governor's Office on Disability (GOOD)
Visit the Governor’s Office on Disability (GOOD) Website
GOOD has resources and information concerning disability issues.
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.
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.
Local School Districts
Alabama School Systems Map
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.
Preschools, Schools, Adult Day Programs
Recreation and Rehab
Offering recreation, rehabilitation, adaptive sports, and aquatics opportunities for individuals with disabilities through weekly lessons, classes, sports teams, individual experiences, and camps.
Special Needs Trust
Health Insurance Premium Reimbursement Program
ALHIPP- Alabama Health Insurance Premium Payment Program
Reimburses monthly health insurance premiums for families who hold a private or employer health insurance plan as their child’s primary insurance and use Medicaid as secondary insurance.
Respite Care Services
Children’s Hospital of Alabama Outpatient Therapy
Provides Physical, Occupational, Nutritional, Speech/Language and Behavioral therapies
United Ability’s Ability Clinic
Provides therapy services in PT, OT, and Speech and have treated many children with Rett Syndrome and are familiar with their unique needs
Alabama Special Education Services
Visit the Alabama Special Education Services Website
For information on Alabama Special Education Services contact the Special Education Services Coordinator at [email protected].
Transition to Adult Services
Local School Districts
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.
Alabama Department of Rehab Services
Alabama State Department of Education Transition Services
Alabama Department of Senior Services
Alabama Disability Advocacy Program– for information on transition services and laws
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.
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.
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
Special Education Lawyers
Alabama Travel Resources
Wheelchair Accessible trails
Wheelchair Accessible Transportation
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].