Virginia
- Family Empowerment Representatives
- Treatment and Research Centers
- State Agencies & Resources
- Parent Recommended Resources
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
Ann-Marie Kinzler, volunteer Family Empowerment Representative, Manassas Park, VA
[email protected] 1-703-335-0911
Deborah Jennings-Booze, volunteer Family Empowerment Representative, Chesapeake, VA
[email protected] 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, [email protected].
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.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
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
[email protected]
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
Virginia State Parks
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 IRSF Families Facebook page
Visit the Virginia/DC International Rett Syndrome Foundation Families Facebook page