Minnesota Resources

Family Empowerment Representatives | Treatment and Research Centers | MN State Agencies | Parent Recommendations


 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.

Brittney Gibson, Rettsyndrome.org  bgibson@rettsyndrome.org  1-800-818-7388

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


Clinical Trials

Please contact trial site for current enrollment status.

 

Natural History Study

 

Gillette Children's Specialty Healthcare

1-651-325-2331 Rachel Katoch  1-651-290-8707  Appointments

Dr. Art Beisang (Pediatric Services) and Dr. Robert  Wagner (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

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 - Minnesota


Local Service Agencies

Minnesota Department of Human Services (DHS)

DHS provides essential services to persons with disabilities.  

DHS Contacts


Handicap Placard

Minnesota DMV

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.

Handicap Placard Application


State Medicaid 

Medical Assistance for Children with Disabilities - TEFRA Option

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

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

Community Access for Disability Inclusion (CADI) Waiver

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.

Minnesota Waivers


Early Intervention

Minnesota Department of Health (MDH)

MDH has information on early intervention services for your child.

Help Me Grow

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

Preschool for Special Education

Minnesota's Preschool for Special Education (ages 3-5) provides services based on the individual educational needs of children who meet state eligibility criteria.


Education

Special Education

The Special Education Division of Minnesota Department of Education provides links and information on special education.


Conservatorship

Conservatorship is a legal proceeding in which an individual or agency is appointed by a court to be responsible for a person who needs assistance in activities of daily living. This process should be started approximately 6 months before the 18th birthday.

 Minnesota Judicial Branch

The Minnesota Judicial Branch offers information on Guardianship and Conservatorship


Transition to Adult Services

Minnesota Department of Education (MDE)

MDE offers a collection of resources and tools to help plan for secondary transition throughout the IEP process.


Parent Recommendations

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


 Medical Professionals

ClinicalTrials.gov

This site has a comprehensive listing of clinical studies involving Rett syndrome patients or families.


Therapy ( PT, OT, Speech, Hippotherapy and Aquatherapy)


Legal Resources


Recreation


More Parent Recommendations

Minnesota Rett Families Group Facebook

Midwest Rett Syndrome Foundation (MRSF)

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.

Midwest Rett Syndrome Foundation Facebook

System of Technology to Achieve Results Program (STAR)

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.  star.program@state.mn.us 1-651-201-2640

National Assistive Technology in Education (NATE) Program 

The NATE program brings together information from from several fields that are involved in AT services in education.