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
Family Empowerment Representative
Nicole Bacan, volunteer Family Empowerment Representative
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.
Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.
State Agencies & Resources
Local Service Agencies
Health KiCC provides financial assistance for medical appointments, procedures, treatments, medications and travel reimbursement for children (under age 21) with certain chronic health conditions. Care coordination services are also available upon request. Email or call for application information.
South Dakota Parent Connection (SDPC)
South Dakota Parent Connection (SDPC) connects families caring for children/youth (ages birth to 26) with the full range of disabilities or special health care needs to information, training and resources in an environment of support, hope and respect.
Parent Training and Information Center (PTI)
Parent Training and Information Center (PTI) helps parents receive appropriate education and services for their children (Birth through age 26) with disabilities, works to improve education results for all children, trains and informs parents and professionals and connects children with disabilities to resources that address their needs. firstname.lastname@example.org.
Family to Family Health Information Center (F2F HIC)
Family to Family Health Information Center (F2F HIC) provides information and guidance to families, and the professionals who serve them, to access services and resources for children and youth with special health care needs.
Rural Health Outreach Project (RHOP)
Rural Health Outreach Project (RHOP) provides outreach and individual assistance to promote early and continuous identification of special health care needs, improved access to community-based systems of care and improved transition tools and options for youth in transition.
Community of Care (COC)
The Community of Care (COC) consortium is dedicated to creating a better South Dakota for children and youth with special health care needs (CYSHCN), their families, and the providers that support them.
Center for Disabilities
The Center for Disabilities is located within the Health Science Center in Sioux Falls, South Dakota and is under the umbrella of the University of South Dakota, Sanford School of Medicine. They provide activities that support people with disabilities to live, work, and fully participate in their communities. They also support parents, siblings, professionals and stakeholders in the community.
SD DSS Online System
SD DSS Online System allows you to apply for Medicaid and CHIP and other low-income assistance programs. You can apply to Medicaid and CHIP through HealthCare.gov or by phone. You can also download forms then mail, fax, or take the application in person to a local Social Services office.
Disabled Children's Program
Disabled Children’s Program provides South Dakota Medicaid for certain disabled children (under age 19) in South Dakota. The program is intended for children with disabilities who have medically fragile conditions requiring skilled nursing care in a medical facility if they were not being cared for at home. You can apply by phone.
Home and Community Based Services
Home and Community Based Services provides South Dakota Medicaid for individuals with developmental disabilities who would otherwise be institutionalized in a Medicaid-funded hospital, nursing facility or an intermediate care facility. You can apply by phone.
The Navigator Program
The Navigator Program, a partnership between the South Dakota Department of Education, Special Education Programs and South Dakota Parent Connection, provides individualized guidance to parents of children and youth with disabilities or special health care needs and school professionals at no cost.
South Dakota DOR
South Dakota DOR issues handicap placards and plates. A licensed physician must sign the application. Submit a completed application to your local county treasurer’s office. There is no cost for either type of disabled reserved parking permit; an individual can request two permanent portable permits if they have more than one vehicle.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to email@example.com.
Legal Resources & Information
South Dakota Advocacy Services
South Dakota Advocacy Services is South Dakota’s gubernatorial designated protection and advocacy (P&A) system. P&As are mandated under various federal statutes to provide legal representation and other advocacy services to all eligible persons with disabilities. These services are provided through a variety of vehicles: individual representation, educating policy makers, advocacy for groups, information and referral services, rights education, and self-advocacy training.
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.