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
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
Aging and Disability Resource Centers (ADRC)
ADRC offers information and assistance on services matching your family’s needs. Contact your local county ADRC office for more information. Disability Benefit Specialists within ADRC can answer questions regarding Social Security, Medicare, health insurance, and other public and private benefits for people with disabilities.
The Katie Beckett Program
The Katie Beckett Program is a special eligibility process that allows certain children with long-term disabilities, mental illness, or complex medical needs, living at home with their families, to obtain a Wisconsin Forward Health Medicaid card. Children who are not eligible for other Medicaid programs due to income restrictions may be eligible through the Katie Beckett Program even if they are currently covered under a private health insurance policy. For more information, contact the Katie Beckett Program Consultant in your county.
Wisconsin's Children's Long-Term Support Waivers (CLTS)
CLTS Waivers make Medicaid funding available to children who are living at home or in the community and who have substantial limitations due to developmental, emotional, or physical disabilities. Funding may be used to support a range of services that are identified based on an assessment of your child’s needs and goals. Wisconsin has three CLTS Waivers, one for each category of disability: developmental disabilities, severe emotional disabilities, and physical disabilities. Some children will qualify for more than one Waiver. To apply, contact your county Social Service or Human Service Agency.
Wisconsin Department of Public Instruction
Wisconsin Statewide Parent-Educator Initiative (WSPEI)
WSPEI is a service for families, educators, and others interested in parent-educator partnerships for children with disabilities. They support increased sharing of information among parents, schools, projects, organizations and agencies through networking meetings, conferences, person-to-person contact, and media.
Transition to Adult Services
County Aging & Disability Resource Center (ADRC)
Young people with disabilities, who receive services and supports as children, will also need to consider how to find services and supports as adults. If you are a teen or young adult receiving services as a child, or if you are the parent of a young adult, it is important to start planning for the transition to adulthood as early as possible. ADRC can help.
Department of Vocational Rehabilitation (DVR)
– Deanna Krell
– Sarah Lincoln
The DVR partners with the Department of Public Instruction (DPI) and the Department of Health Services (DHS) to provide a smooth transition from school to the world of work and community services. Contact Deanna Krell, or Sarah Lincoln, SarahJ.Lincoln@dwd.wisconsin.gov.
State of Wisconsin Department of Transportation
The DOT issues handicap placards. Complete the application and have it signed by a medical professional (acceptable professions listed in the Eligibility section on the application). Mail or submit application in person to your local WISDOT office. Applications submitted in person are subject to a fee. Handicap placards must be renewed every 4 years.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to firstname.lastname@example.org.
Marshfield Clinic Chippewa Falls Dental Center
Dentists and hygienists at the Marshfield Clinic take people with Medicaid and people without any insurance. They specialize in caring for people with disabilities who need extra help to get through a checkup and cleaning.
Dr. Deb McLeish
Dr. McLeish is a Physiatrist at UWHC Madison and St. Mary’s Hospital. She is board certified in Pediatrics, Physical Medicine and Rehabilitation, and Pediatric Rehabilitation.
Dr. Ken Noonan
Dr. Noonan is an Orthopedic Surgeon at UWHC Madison and also sees patients at St. Mary’s Hospital Gait Clinic.
Dr. Elizabeth Moberg
Dr. Moberg practices Pediatric Rehab Medicine at Children’s Hospital of Wisconsin, Milwaukee.
Dr. Amy Grelle
Dr Grelle is a Family Medicine Physician in Cross Plains, WI.
Dr. Christina Iyama
Dr. Iyama specializes in Developmental Pediatrics at the Waisman Center in Madison.
Three Gaits Therapeutic Horsemanship Center, Stoughton, WI
Legal Resources & Information
Wisconsin Rettsyndrome.org Families Facebook
Katy’s Kloset is a nonprofit lending library that accepts donations of gently used durable medical equipment,
Living Our Visions, Inc. (LOV-Dane)
Hancock Center for Dance/Movement Therapy