Nebraska

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

Terri and Dave Larson, volunteer Family Empowerment Representatives
terri@plumstreet.com  1-402-474-4855.

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

Medically Handicapped Children's Program (MHCP)

Visit Medically Handicapped Children’s Program (MHCP) Website
MHCP provides specialized medical services for families with children with disabilities or ongoing health care needs. Services may include services coordination/case management, specialty medical team evaluations, access to specialty physicians, and payment of treatment services.

Dream Factory of Nebraska

Visit Dream Factory of Nebraska 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

ACCESSNebraska

Visit ACCESSNebraska Website
1-855-632-7633
ACCESSNebraska is a convenient, online way to apply for Nebraska Medicaid.

Early Intervention

Nebraska Early Development Network (EDN)

Visit Nebraska Early Development Network (EDN) Website
1-888-806-6287
Nebraska Early Development Network (EDN) Babies Can’t Wait Program EDN serves children from birth to age three. A child is eligible if he or she is not developing typically or has been diagnosed with a health condition that will affect his or her development. To apply, call or visit the Planning Region Team Map to find the office that services your area.

Visit Planning Region Team Map Website

Education

Nebraska Department of Education Office of Special Education

Visit Nebraska Department of Education Office of Special Education Website

Transition to Adult Services

Nebraska Transition Youth to Young Adult

Visit Nebraska Transition Youth to Young Adult Website
1-402-595-2092
This program is designed to assist students and their families with the transition process.

Handicap Placard

DMV Nebraska

Visit DMV Nebraska Website
To apply for a handicap placard in Nebraska, have a physician fill out the application and submit by mail to Nebraska Department of Motor Vehicles Department; Driver and Vehicle Records Division; Attn: Handicap Parking Permits; P.O. Box 94789; Lincoln, NE  68509-4789.

View or Download the Application for Handicap Parking Permit

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

Legal Resources & Information

The ARC of Nebraska

Visit The ARC of Nebraska Website
1-402-475-4407
The ARC of Nebraska provides advocacy to people with disabilities and their families.

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

Nebraska Strollathon for Rett Syndrome Facebook Page

Visit the Nebraska Strollathon for Rett Syndrome Facebook Page

Rett Syndrome Families of Nebraska Facebook Page

This page is private, click and ask to join.