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
Ashley Dahms, volunteer Family Empowerment Representative,
[email protected] 1-763-607-9963
Matt Dahms, volunteer Family Empowerment Representative,
[email protected] 1-763-222-4995
Connie Lindberg, volunteer Family Empowerment Representative,
[email protected] 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.
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 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
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.
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.
Medical Assistance for Children with Disabilities - TEFRA Option
Visit Medical Assistance for Children with Disabilities – TEFRA Option Website
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
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
Minnesota Judicial Branch
Visit Minnesota Judicial Branch Website
The Minnesota Judicial Branch offers information on Guardianship and Conservatorship
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.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
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.
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 [email protected]
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.