Utah

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

Anna Dance, volunteer Family Empowerment Representative
annad@mwciutah.com  1-801-897-1400

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.

Clinics

Rett Clinic at Children's Hospital Colorado

Visit Rett Clinic at Children’s Hospital Colorado Website
The Rett Clinic at Children’s Colorado was established in 2011 thanks to a generous gift from the Rocky Mountain Rett Association. 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).

The Rett Clinic is located in the Multidisciplinary Clinic at Children’s Colorado, which means that the doctors and specialists come directly to the patient and family (and not the other way around) to provide streamlined care for children with complex needs.  The clinic is led by Director, Dr. Tim Benke. For appointments, contact Tristen Dinkel, RN, Clinic Coordinator at rettclinic@childrenscolorado.org or call 720-777-4363.

Watch the Colorado Clinic video.

State Agencies & Resources

Local Service Agencies

Office of Home Visiting (OHV) 

1-800-883-4673
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) 

Visit Children with Special Health Care Needs (CSHCN) Website
1-800-829-8200
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 

Visit Utah Department of Health Website 

The Dream Factory of Utah

Visit The Dream Factory of Utah Website
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.

State Medicaid

Utah Medicaid

Visit Utah Medicaid Website
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 

Visit Technology Dependent Waiver Website
1-800-829-8200
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

Visit Community Supports Waiver Website
1-801-538-4200
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.

Conservatorship

Utah Courts

Visit Utah Courts Website
Utah Courts has guardianship and conservatorship information and forms.

Transition to Adult Services

Utah Parent Center

Visit Utah Parent Center Website
1-800-468-1160
Utah Parent Center offers helpful guides and worksheets to assist with the transition process.

Handicap Placard

Utah Department of Motor Vehicles

View Utah Department of Motor Vehicles Website
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.

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

Legal Resources & Information

Utah Developmental Disabilities Council

Visit Utah Developmental Disabilities Council Website
1-800-533-3965
Utah Developmental Disabilities Council can help advocate for persons with disabilities.

Additional Resources

Rocky Mountain Rett Association

Visit Rocky Mountain Rett Association Website
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
(720) 234-7673
info@rmrett.org 

Utah Rettsyndrome.org Families Facebook page 

Visit the Utah Rettsyndrome.org Families Facebook page