Alabama Resources

Family Empowerment Representatives | Treatment and Research Centers | AL 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  bgibson@rettsyndrome.org  1-800-818-7388

Susan Lee , volunteer Family Empowerment Representative  slee4al@hotmail.com 1-205-910-2353


Treatment and Research Centers


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.

 UAB Rett Syndrome Clinic

1-205-934-1130

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 jlane@uab.edu 

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: Courtyard Birmingham Downtown at UAB and Spring Hill Suites Birmingham Downtown at UAB 

 

Evaluation of the Efficacy, Safety, and Tolerability of Sarizotan in Rett Syndrome With Respiratory Symptoms

 

This study evaluates the safety, tolerability and efficacy of Sarizotan in reducing respiratory abnormalities in Rett syndrome.  Eligibility criteria include girls or boys age 13 or above.

University of Alabama, Birmingham

1-205-996-4927

For study information, please contact Jane Lane at jlane@uab.edu

 

 

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. 

University of Alabama, Birmingham

1-205-934-1130

For more information, please contact Jane Lane at jlane@uab.edu or Dr. Alan Percy.


 State Agencies - Alabama


Local Service Agencies

Alabama Rett Connect

Alabama Rett Connect exists to locate,  inform, and bring together Rett Syndrome families around the state of Alabama. The website is a comprehensive source of available supports and services.

Alabama Connect

1-800-243-5463

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)

GOOD has resources and information concerning disability issues.


Handicap Placard

Alabama Motor Vehicle Division

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.


State Medicaid 

Home and Community Based Service for Persons with Intellectual Disability

1-800-367-0955

This waiver provides services to intellectually disabled adults and children, beginning at age 3, who would otherwise qualify for care in an intermediate care facility for the  intellectually disabled. 

Alabama Medicaid Agency

 1-334-242-5000

Medicaid for Alabama is administered through a variety of programs for children, families and pregnant women as well as for elderly and/or disabled people. 

Alabama Community Transition (ACT)

1-334-293-7500

The Alabama Community Transition (ACT) Waiver will provide services to individuals with disabilities or long term illnesses who currently live in a nursing facility and who desire to transition to the home and community setting. The waiver is operated by the Alabama Department of Rehabilitation Services (ADRS). To apply, contact the Alabama Department of Rehabilitation Services or contact your local office directly. 

Local ADRS offices


Early Intervention

Alabama Early Intervention System

1-800-543-3098

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. 


Education

Local School Districts

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

1-334-242-8114

For information on Alabama Special Education Services contact Crystal Richardson, Special Education Services Coordinator at speced​@alsde.edu


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.

Legal Counsel

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


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.

Vocational Rehabilitation Service (VRS)

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.


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

Alabama Disabilities Advocacy Program (ADAP)

1-205-348-4928

ADAP provides legal services to Alabamians with disabilities to protect, promote and expand their rights. 


Recreation

The Birmingham Zoo

Beach Wheelchair Rentals

They offer motorized wheelchairs available for rent at the Gulf Shore/Orange Beach. Reservations needed and limited delivery is available.

Wheelchair Accessible trails


More Parent Recommendations

Alabama rettsyndrome.org Families Facebook page

This s a private forum, so click and ask to join.

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.

SRSA

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

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