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
[email protected] 1-913-221-8157
Family Empowerment Representative
David Luntz, volunteer Family Empowerment Representative,
[email protected] 1-907-590-9140
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
Visit the Aging and Disability Resource Centers Website
Alaska’s ADRCs connect seniors, people with disabilities, and caregivers with long-term services and supports of their choice. The ADRC network serves Alaskans statewide, regardless of age or income level, through regional sites.
Pediatric Specialty Clinics
Visit Pediatric Specialty Clinics Website
Specialty clinics improve access to care for children in need of consultation, screening, and follow-up. The State of Alaska’s Section of Women’s Children and Family Health (WCFH) brings medical specialists to regional centers to offer specialty care in or close to communities where children and their families reside. Efforts are made to involve local health practitioners in these clinics to insure coordination of care.
Neurodevelopmental Outreach and Autism Screening Clinic
Alaska Association on Developmental Disabilities (AADD)
The Arc of Anchorage
Visit The Arc of Anchorage Website
The Arc of Anchorage has a full array of disability services for Alaskans with intellectual and developmental disabilities.
Apply for Medicaid
Apply for Medicaid online at MyAlaska. Under Services for Individuals, click on ARIES Self-Service Portal. You can also apply by mail or in person with your local Public Assistance Office.
Denali KidCare - Alaska’s Children’s Health Insurance Program - (CHIP)
Visit Denali KidCare – Alaska’s Children’s Health Insurance Program Website
DenaliKidCare is designed to ensure that children and teens of both working and non-working families can have the health insurance they need. It is an expansion of the Medicaid Program in Alaska. DenaliKidCare is issued 12 months at a time. You will need to renew your application every 12 months to ensure there is not a break in coverage. Renewing your coverage is easy. A pre-printed form will be mailed to you 45 days prior to expiration of coverage. Apply the same way you would apply for Medicaid.
Vist the TEFRA Waiver Website
TEFRA Waiver is a Medicaid program designed to help children under 19 years old with costs related to their disabilities. This covers significant medical, developmental or psychiatric needs. Though they may be deemed “disabled” or have high medical costs, not all children qualify for this program. You can apply through the State of Alaska Department of Public Assistance (DPA). The DPA is the central agency in all TEFRA Medicaid eligibility decisions.
NFLOC Waiver Unit
Visit the NFLOC Waiver Unit Website
NFLOC Waiver Unit is responsible for the oversight of service providers and support systems of funding for Children with Complex Medical Conditions (CCMC). Apply through ADRC.
Intellectual & Developmental Disabilities (IDD) Waiver Unit & Services
Visit the Intellectual & Developmental Disabilities Waiver Unit & Services Website
This program is responsible for the oversight of service providers and support systems of people with intellectual and developmental disabilities receiving funding through the Intellectual and Development Disabilities Waiver. The purpose of the waiver is to offer a choice between home and community-based services and institutional care for people who meet waiver service criteria.
Special Education Handbook
Guardianship and Conservatorship Forms
Office of Public Advocacy
Visit the Office of Public Advocacy Website
The Office of Public Advocacy has guardianship and conservatorship resources and information.
Transition to Adult Services
Visit SERRC Website
SERRC provides secondary transition services to districts and oversees the Alaska Transition Outcome Project grant.
Alaska Youth Transition Handbook
Access Alaska Fairbanks’ Youth Transition Program
Disability Parking Permits & Plates
Visit the Disability Parking Permits & Plates Website
You must bring the Special Disability Parking Permit (form 861) to a qualified health practitioner who will complete and sign the form. You may submit the completed form in person at your local DMV or by mail to: Division of Motor Vehicles, ATTN: Special Disability Parking Permit ,1300 W. Benson Blvd., STE 200, Anchorage, AK 99503-3600. You must apply for plates in person at your local DMV office.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Legal Resources & Information
Disability Law Center of Alaska Website
Stone Soup Group
Visit Stone Soup Group Website
Stone Soup Group is a statewide 501(c)3 non-profit that provides information, support, training and resources to assist families caring for children with special needs. SSG is staffed almost entirely by parents or family members of a child with special needs, so they know the journey and are better able to help other families navigate through what is often an overwhelming and confusing process following a diagnosis or, at times of transition later down the road.