Virginia

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, Rettsyndrome.org
sbrant@rettsyndrome.org  1-913-221-8157

Family Empowerment Representative

Ann-Marie Kinzler, volunteer Family Empowerment Representative,  Manassas Park, VA
amkinzler@hotmail.com 1-703-335-0911

Deborah Jennings-Booze, volunteer Family Empowerment Representative, Chesapeake, VA
angeldove1075@gmail.com 1-757-717-1960

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.

State Agencies & Resources

Local Service Agencies

Community Service Board (CSB)

Visit Community Service Board (CSB) Website
CSB is the point of entry into the publicly funded system of services. Contact your local office for more information.

Department of Medical Assistance Services (DMAS)

Visit Department of Medical Assistance Services (DMAS) Website
1-804-786-7933
Department of Medical Assistance Services (DMAS) DMAS is the agency that administers Medicaid in Virginia.

State Medicaid

Common Help Virginia 

Visit Common Help Virginia Website
Common Help Virginia can help determine eligibility for services and check benefits.

Early Intervention

Infant and Toddler Connection of Virginia

Visit Infant and Toddler Connection of Virginia Website
1-800-234-1448
Infant and Toddler Connection of Virginia provides early intervention supports for infants and toddlers.

Care Connection for Children

Visit Care Connection for Children Website
1-804-827-1795
Care Connection for Children is a statewide network of six regional programs that coordinates the health care, community support services and resources to children with special health care needs, careconnect@mcvh-vcu.edu. 

Conservatorship

Virginia Department of Aging

Visit Virginia Department of Aging Website
1-804-662-9333
Virginia Department of Aging has many resources to help with the guardianship process.

Transition to Adult Services

Virginia Department of Education Transition Services (VDOE) 

Visit Virginia Department of Education Transition Services (VDOE) Website
VDOE’s website provides support, information and resources for a successful transition from school to adult services.

Handicap Placard

Virginia DMV

Visit Virginia DMV Website
Contact your city or municipality.  They will mail out the form. You can also use the link provided. You and your child’s pediatrician should fill out the form and take it back to the municipal offices to receive the placard.

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

Medical Professionals

Dr. James Wilson 

Carilion Pediatric Neurology 1-540-985-8454

Dr. Richard Cordle  

Carilion Pediatric GI/Nutrition Clinic 1-540-985-9832

Therapy

Healing Strides of VA 

1-540-334-5825
info@healingstridesofva.org 

Legal Resources & Information

The ARC of Virginia

Visit The ARC of Virginia Website
1-804-649-8481
The ARC of Virginia supports the rights of individuals with disabilities in Virginia.

Recreation

Accessible parks in Virginia

View Accessible parks in Virginia

Kings Dominion

Visit Kings Dominion Website
Kings Dominion has many attractions and accessible features. They also offer a Ride Boarding Pass program which gives a return time for people to come back and enter through the exit of the ride.

Additional Resources

Virginia/DC Rettsyndrome.org Families Facebook page

Visit the Virginia/DC Rettsyndrome.org Families Facebook page