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, International Rett Syndrome Foundation
[email protected] 1-913-221-8157
Family Empowerment Representative
Melinda Gebhard, volunteer Family Empowerment Representative, 701-213-7151, [email protected]
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.
Natural History Study
Gillette Children’s Specialty Healthcare
Visit Gillette Children’s Specialty Healthcare Website
1-651-325-2331 Kat Harrison
Dr. Art Beisang (Pediatric Services) and Dr. Jill Gettings (Adult Services) collaborate with a team of specialists to offer treatment to patients with Rett syndrome. For more information on the NHS Study, contact Kat Harrison [email protected].
Travel Assistance for NHS Sites – 1-781-333-1593
Marriott is working on establishing discounts for hotels near our clinical trial sites. For more information, contact Ashley Lucchese, Marriott Sales Executive [email protected]
For nearby hotel information, click here
Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.
Biobanking of Rett Syndrome and Related Disorders
Visit Biobanking of Rett Syndrome and Related Disorders Website
The purpose of this study is to advance understanding of the natural history of Rett syndrome (RTT), MECP2-duplication disorder (MECP2 Dup), RTT-related disorders including CDKL5, FOXG1, and individuals with MECP2 mutations who do not have RTT. Samples with DNA will be collected. This study is being conducted by Gillette Children’s Specialty Healthcare.
State Agencies & Resources
Local Service Agencies
Division of Children's Special Health Services (CSHS)
The Division of Children’s Special Health Services (CSHS) is located within the Community Health Section in the North Dakota Department of Health (NDDoH). The purpose of CSHS is to provide services for children with special health care needs and their families and promote family-centered, community-based, coordinated services and systems of healthcare.
Developmental Disabilities Services
Developmental Disabilities Services provides support and training to individuals and families in order to maximize community and family inclusion, independence, and self-sufficiency; to prevent institutionalization; and to enable institutionalized individuals to return to the community.
Application for Assistance Guidebook
You may apply for any or all of these programs with this online application: Temporary Assistance for Needy Families (TANF), Child Care Assistance Program (CCAP), Supplemental Nutrition Assistance Program (SNAP), Healthy Steps (Children’s Health Insurance Program – CHIP),Medicaid, Basic Care Assistance Program (BCAP).
Children with Disabilities Medicaid Coverage
This program allows families with children to “buy-into” the Medicaid program by paying a monthly premium based on the family’s income. The program also covers mental health and some dental services. A child must be under the age 19. For information, contact your local county social service office.
Application for Medicaid
Medicaid Waiver HCBS
Medicaid Waiver HCBS Provides adult day care, adult residential care, case management, homemaker, respite care, supported employment, adult family foster care, chore, emergency response, environmental mods, extended personal care, family personal care, home delivered meals, non-medical transportation, specialized equipment and supplies, and transitional living. You can apply by phone.
Children with Medically Fragile Needs Waiver
The goal of this waiver is to assist families in keeping their child (Age 3-18) home instead of having to place them in a nursing home or hospital to receive needed care. This waiver is “parent- driven” meaning the parent determines what their family can or cannot do, and the parent identifies what it will take for the family to be able to keep their child at home. Contact the Program Manager to complete an application.
Early Intervention North Dakota
Right Track Consultants can meet with you in the privacy of your own home and can provide: Developmental Screenings; Ideas on stimulating your child’s development; and Information and referrals to local, state, and national organizations.
Transition to Adult Services
Transition planning for the movement from high school to adult living is required for all students receiving special education services. IEP teams must now include transition planning in the first IEP that will be in effect when the child is 16 years of age, or younger if deemed appropriate by the IEP team.
North Dakota DOT
North Dakota DOT issues handicap placards and plates. To apply for a handicap placard or license plate, you will need to complete the Application for Mobility-Impaired Parking Permit, which must include medical certification. Submit your application by mail or in person to your local ND motor vehicle office.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to a[email protected].
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.
Midwest Rett Syndrome Foundation (MRSF)
Visit Midwest Rett Syndrome Foundation Website
The mission of MRSF is to fund research initiatives and promote wellness and education of families within the community that are affected by Rett syndrome.
North Dakota Assistive
North Dakota Assistive (formerly IPAT) is a non-profit organization that strives to bring assistive technology devices and services into the lives of North Dakotans and Minnesotans of all ages who need it. Our goal is to help bridge the gap between ability and disability using assistive technology.
North Dakota Association for the Disabled
NDAD is a statewide, charitable nonprofit organization helping people with a wide range of disabilities and medical needs in North Dakota and neighboring communities. From specialized equipment or prescription medications to other costly medical travel or services, NDAD’s goal is to relieve the financial burden of our clients so they can focus on their health.
Family Voices of North Dakota
Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through this national network, Family Voices provides families tools to make informed decisions, advocates for improved public and private policies, builds partnerships among professionals and families, and serves as a trusted resource on health care.