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
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.
Rett Clinic at Children's Hospital Colorado
The Rett Clinic at Children’s Colorado was established in 2011 thanks to a generous gift from the . Many doctors and specialists come together to provide coordinated care and convenience for the child and family (about 14 providers are at the first appointment).
State Agencies & Resources
Local Service Agencies
Wyoming Institute for Disabilities (WIND)
Wyoming Institute for Disabilities (WIND) assists individuals with developmental and other disabilities and their families by promoting and supporting full community inclusion, community membership, independence, productivity and social participation. WIND provides early intervention activities, training and technical assistance to professionals, research on disability issues and is home to the state assistive technology program and accessible instructional material coordinating center.
Accessible Tools for Leadership and Advocacy Success (ATLAS)
Accessible Tools for Leadership and Advocacy Success (ATLAS) is a toolkit created by Genetic Alliance, Parent to Parent USA, and Family Voices that provides individuals with special healthcare needs and their families with tools and strategies to advocate for whatever they may need. Resources are grouped by category on the Advocacy ATLAS landing page.
Early Intervention and Education Program
Wyoming Department of Health Early Intervention and Education Program ensures that services are provided to eligible children birth through 5 with Developmental Delays and disabilities.
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
Rocky Mountain Rett Association
The Rocky Mountain Rett Association (RMRA) was founded for three reasons; to fund research for the development of treatments & cures for Rett Syndrome and related MeCP2 disorders, to support families suffering from Rett, and to raise awareness for Rett Syndrome.