Minnesota

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

Ashley Dahms, volunteer Family Empowerment Representative,
Ashley.dahms@gmail.com 1-763-607-9936

Matt Dahms, volunteer Family Empowerment Representative,
dahmsma@gmail.com  1-763-222-4995

Connie Lindberg, volunteer Family Empowerment Representative,
ccl41@aol.com  1-612-247-3210

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.

Natural History Study

Gillette Children’s Specialty Healthcare
Visit Gillette Children’s Specialty Healthcare Website
1-651-325-2331 Rachel Katoch
1-651-290-8707 Appointments
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 Rachel Katoch  rkatoch@gillettechildrens.com.

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 Ashley.Lucchese@Marriott.com.

Nearby hotels include: Courtyard Minneapolis-St. Paul Airport, Fairfield Inn & Suites Minneapolis-St. Paul Airport

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.

Clinics

Gillette Quick Care Clinic

Visit Gillette Quick Care Clinic Website
Does your child need care right away? Our new Quick Care Clinic is here for you. The clinic provides care for established Gillette patients that have been seen within the last three years, from infancy through age 17, who have minor health issues on a same-day or next-day appointment basis. The Quick Care Clinic does not offer walk-in appointments.
Hours: Monday through Friday 1 p.m. to 5 p.m. Gillette St. Paul Campus
For appointments, please call 1-651-229-3890

State Agencies & Resources

Local Service Agencies

Minnesota Department of Human Services (DHS)

Visit Minnesota Department of Human Services Website
DHS provides essential services to persons with disabilities.
DHS Contacts

State Medicaid

Medical Assistance for Children with Disabilities - TEFRA Option

Visit Medical Assistance for Children with Disabilities – TEFRA Option Website
1-866-333-2466
TEFRA option allows children with disabilities, who would not typically qualify for coverage, to receive medical assistance. Only the child’s income is considered. To apply, call the Disability Linkage line listed above.

Community Alternative Care (CAC) Waiver

View Community Alternative Care (CAC) Waiver
The CAC Waiver provides funding for services for children who would otherwise require care in a hospital setting. Apply via your local Human Services agency.

Human Service Agency Offices

Visit Human Service Agency Offices Website
The CADI waiver provides funding for home and community-based services. Apply via your local Human Service agency.

Developmental Disabilities (DD) Waiver

The DD waiver provides services and supports for people with developmental disabilities. Apply via your local Human Services agency.
View Minnesota Waivers

Early Intervention

Help Me Grow

Visit Help Me Grow Website
Help Me Grow has many resources for families who have a child with a developmental disorder. Call to refer your child. 1-866-693-4769

Conservatorship

Minnesota Judicial Branch

Visit Minnesota Judicial Branch Website
The Minnesota Judicial Branch offers information on Guardianship and Conservatorship

Handicap Placard

Minnesota DMV

Visit Minnesota DMV Website
You can apply for a handicap placard either in person or by mail. Fill out the Application for Disability Parking Certificate (Form PS2005) and have it signed by a doctor. Submit your application in person to your local DVS office or by mail to the address on the form. Permanent Permits need to be renewed every 6 years.

View Handicap Placard Application

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

Additional Resources

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.

View Midwest Rett Families Group Facebook Page

System of Technology to Achieve Results Program (STAR)

Visit System of Technology to Achieve Results Program Website
The mission of the STAR program is to help all Minnesotans gain access to and acquire the assistive technology they need to live, learn, work and play.
Email star.program@state.mn.us
1-651-201-2640

National Assistive Technology in Education (NATE) Program

Visit National Assistive Technology in Education Program Website
The NATE program brings together information from several fields that are involved in AT services in education.