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
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
Office of Home Visiting (OHV)
OHV is a Utah Department of Health Program. OHV ensures that Utah families with young children have access to voluntary high-quality home visiting services that promote safe and healthy children, families and communities.
Children with Special Health Care Needs (CSHCN)
Children with Special Health Care Needs (CSHCN) is a program offered by the Utah Department of Health. CSHCN provides and promotes family-centered, coordinated care and facilitates the development of community-based systems for these children and their families.
Utah Department of Health
The Dream Factory of Utah
The Dream Factory is the largest children’s wish-granting organization that does not limit its mission to children who have life-threatening illness. The organization believes children with chronic illnesses and disorders also suffer from substantial emotional and physical pain.
There are three divisions of Medicaid for children. Financial need is based on the child’s income, not family income. To apply, download and send to Department of Workforce Services; PO Box 143245; Salt Lake City, Utah 84114-3245.
Technology Dependent Waiver
The Technology Dependent Waiver provides skilled nursing care, extended health aide or private care nurse, and various other family support services. This waiver is only dependent on the child’s income and serves children up to the age of 21. Must be enrolled before the child’s 21st birthday. There may be a waiting list. Apply by phone.
Community Supports Waiver
The Community Supports Waiver provides services statewide to help persons with intellectual disabilities remain in their homes. Individuals are able to live as independently as possible with supportive services provided through this waiver program. There is currently a wait list for this waiver. Apply by phone.
Utah Courts has guardianship and conservatorship information and forms.
Transition to Adult Services
Utah Department of Motor Vehicles
Utah Department of Motor Vehicles issues handicap placards. Request an application for a handicap placard by phone or in person at your local DMV office. You and your child’s doctor will fill the form out. Return to your municipality to receive the placard. This can only be used when the child is in the automobile.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to firstname.lastname@example.org.
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.
Rocky Mountain Rett Association
PO Box 1294
Morrison, Colorado 80465