Wyoming Resources

Family Empowerment Representatives | Treatment and Research Centers | WY 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

Myrna Johnson, volunteer Family Empowerment Representative,  timandmyrna@gmail.com  1-307-214-4979


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 - Wyoming


Local Service Agencies

Children's Special Health (CSH)

Children's Special Health (CSH) is a program for Wyoming children and youth ( under age 19)  with special health care needs (CYSHCN) who require something beyond routine and basic care. Contact Public Health Nursing or Indian Health Services to apply.

Resources for Families with CYSHCN 

Developmental Disabilities Division of the Department of Health

  bhdmail@wyo.gov

UPLIFT Wyoming

UPLIFT Wyoming provides advocacy and support for families of children with complex behavioral health challenges and other special health care needs.

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.


Handicap Placard 

Wyoming DOT

Wyoming DOT issues handicap placards.  You can apply by mail or in person at your local driver exam office. The top portion of the application form must be completed by you, or a family member for you if you are unable to do so, and your doctor must complete the "Physician Disability Certification" section. Mail to WYDOT - Driver Services, Driver Review, 5300 Bishop Blvd., Cheyenne, WY  82009-3340 When you apply for a handicap placard, you may also desire a handicap license plate. To obtain the license plate, you must indicate this information on the application form.

Application for handicap placard


State Medicaid  

Medicaid/CHIP Application

This is the official website used to apply for Wyoming Department of Health Medicaid and Kid Care CHIP programs.

Supports Waiver and Comprehensive Waiver

 1-800-510-0280

The website has many downloads with information about both waivers.  The Application Guide details the application process. 


Early Intervention

Early Intervention and Education Program

 1-307-777-6972

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. 


Education

Special Education Information 

 1-307-777-3530

 kodi.gerhold@wyo.gov 


Conservatorship

Guardianship and Conservatorship Guide for Wyoming


Transition to Adult Services  

CSH Healthcare Transitioning 

Got Transition 

Got Transition is a national resource for health care professionals, families, youth, and state policy makers focusing on a young adult's transition from pediatric to adult health care.


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 

Protection & Advocacy System, Inc.

 1-307-632-3496


Recreation


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