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
Lisa Rushin, volunteer Family Empowerment Representative, Alma, MI
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
Services to Children with Developmental Disabilities
Visit Services to Children with Developmental Disabilities Website
Kathy Neville 1-616-844-1056
This department provides policy, program guidance, services innovation and technical assistance for services to children with developmental disabilities. It is delivered through the community mental health system. Customer Services functions are performed for children and families encountering systems barriers in accessing services.
Michigan Alliance for Families
Visit Michigan Alliance for Families Website
The Alliance for Families provides information, support, and education for families who have children (birth through 26 years of age) who receive or are eligible for special education services. This website can help you with finding information on special education issues as well as disability specific information.
Bridges4Kids' Michigan Counties
Visit Bridges4Kids’ Michigan Counties Website
Bridges4Kids.org is a non-profit parent organization providing an internet-based system of information and referral for parents and professionals working with children from birth through transition to adult life. It is good place to begin to find local assistance.
Michigan Department of Health and Human Services (MDHHS)
Visit Michigan Department of Health and Human Services Website
MDHHS determines eligibility for most of the health care programs that are administered by the State of Michigan.
Children's Special Health Care Services (CSHCS) County Offices
Visit Children’s Special Health Care Services Website
CSHCS is a program within the Michigan Department of Community Health that provides certain approved medical service coverage to children and adults with special health care needs. Children must have a qualifying medical condition and be under 21 years of age. To apply, contact your county CSHCS office.
Children's Waiver Program (CWP)
Audrey Craft 1-517-241-5757
The CWP makes it possible for Medicaid to fund home and community-based services for children who are under age 18. To be eligible, the child must have a documented developmental disability and need medical or behavioral supports and services at home. To apply, contact your county Access Center or Audrey Craft, Director of Children’s Home and Community-Based Waivers at email@example.com.
Habilitation Supports Waiver (HSW)
Central Access 1-888-800-1559
The HSW is an intensive home and community based, active treatment and support program. It is designed to assist individuals with severe developmental disabilities to live independently with supports in their community. To apply, contact Community Mental Health Services in your county (see above) or contact Central Access.
Early On Michigan
This program offers early intervention services for infants and toddlers, birth to three years of age, with developmental delays or disabilities.
Visit MDHSS Website
MDHSS has Early Intervention information.
Office of Special Education (OSE)
The OSE, within the Department of Education, is responsible for the general supervision, administration, and funding of special education programs and services for children with disabilities ages 3-21.
View Michigan Courts
Michigan Courts has online conservator and guardianship forms.
Transition to Adult Services
Transition to Adulthood Resources
Visit Transition to Adulthood Resources Website
MDHSS lists resources to assist you in planning for future needs including health care, employment, education, and independent living. As youth approach adulthood the transition planning process should provide them with tools and resources to increase their ability to lead productive adult lives.
Visit Got Transition Website
This organization aims to improve transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families.
Permanent Disability Parking Placard
Visit Permanent Disability Parking Placard Website
Placards may be obtained at any Secretary of State office. The application must be signed by a physician, chiropractor, optometrist, physician’s assistant or nurse practitioner. Placards are valid for four years, expiring on the applicant’s birthday. Placards may be renewed up to 45 days before the expiration date or up to six months early. There is no renewal fee. A physician’s statement is not required for renewals.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to firstname.lastname@example.org.
Dr. Steven Leber
Pediatric Neurologist, University of Michigan Medical Center, Ann Arbor, MI,
Dr. Steven Deroos
Pediatric Neurologist, Helen Devos Children’s Hospital, Grand Rapids, MI,
Dr. Ramesh Chheda
Pediatric Neurologist, Hurley Medical Center, Flint, MI , 1-810-720-7801
Dr. Sonja Norris
Special Needs Dentist, Grand Ledge, MI , 1-517-622-4014
Dr. Brooke Geddie
Ophthalmologist at Devos Children’s Hospital, 1-616-267-2605
Dr. Jamie Pavlak
Gastroenterologis at Devos Childrens Hospital, 1-616-267-2100
Dr. Sarah VanHouten
Pulmonologist at Devos Children’s Hospital, 1-616-267-2200
Dr. Chad Afmnan
ENT at Devos Children’s Hospital, 1-616-267-7758
Dr. Robert Conway
Specializes in genetics and has offices in Lansing and Detroit Lansing,
Children's Therapy Corner
1-231-929-2354 Traverse City
Children’s Therapy Corner offers PT, OT and SLI services. Music and Aquatic Therapy available in some locations. Located in Midland, Lansing and Traverse City.
MSU Community Music School
MSU Community Music School in E. Lansing offers private and group music therapy.
Michigan Rettsyndrome.org Families Facebook Page
View Michigan Rett Families Facebook Page
Click and ask to join