Utah Resources

Family Empowerment Representatives | Treatment and Research Centers UT State Agencies | Parent Recommendations


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.

Brittney Gibson, Rettsyndrome.org  bgibson@rettsyndrome.org  1-800-818-7388


Regional Rett Syndrome Associations

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
(720) 234-7673
info@rmrett.org 

 


Treatment and Research Centers


Nearest Clinics 

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 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.

 

Clinical trials -  none at this time


State Agencies - Utah


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) 

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 


Handicap Placard 

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.


State Medicaid 

Utah Medicaid

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 

1-800-829-8200

TheTechnology 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

 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. 


Early Intervention

Baby Watch Early Intervention Program (BWEIP)

1-800-961-4226

BWEIP provices services for children and their families 0-3 years of age. 

 BWEIP County Offices


Education

Utah State Office of Education (USOE)


Conservatorship

Conservatorship is a legal proceeding in which an individual or agency (to be known as the "conservator") is appointed by a court to be responsible for a person who needs assistance in daily living. Check with your child's high school or your county Superior Court Probate Office for information on Self Help Clinics. This process should start 6 months before the 18th birthday.

 Utah Courts

Utah Courts has guardianship and conservatorship information and forms.


Transition to Adult Services

Transition Action Guide

Utah's Transition Action Guide has helpful information on transitioning out of the school district.

Utah Parent Center

 1-800-468-1160

Utah Parent Center offers helpful guides and worksheets to assist with the transition process. 


Parent Recommendations

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


Medical Professionals

ClinicalTrials.gov

This site has a comprehensive listing of clinical studies involving Rett Syndrome patients or families.


Therapy ( PT, OT, Speech, Hippotherapy and Aquatherapy)


Legal Resources

Utah Developmental Disabilities Council

1-800-533-3965

Utah Developmental Disabilities Council can help advocate for persons with disabilities. 


Recreation


More Parent Recommendations

Utah IRSF Rett Syndrome Families Facebook page 

Click and ask to join!

Rocky Mountain Rett Association (RMRA) 

Rocky Mountain Rett Association (RMRA)  is a member-based organization serving the Rocky Mountain region dedicated to improving the quality of life for girls and their families impacted by Rett Syndrome. We achieve this by providing supportive services and resources to girls and their families, engaging in advocacy, education and awareness efforts, and raising funds to support the search for a cure and improved treatment options.