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
Vickie Kirihara, volunteer Family Empowerment Representative
[email protected] 1-808-383-5948
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
Department of Disabilities Division (DDD)
Visit Department of Disabilities Division Website
Department of Disabilities Division (DDD) DDD is part of the Hawaii State Department of Health. The mission of DDD is to prevent and minimize the effect of disabilities on individuals and their families.
Apply for DDD services
Division of Vocational Rehabilitation (DVR)
Visit Division of Vocational Rehabilitation Website
DVR exists to serve its participants. Staff work as a team so participants can achieve their hopes and aspirations for meaningful employment through timely and individualized vocational rehabilitation services. DVR is available for anyone over the age of 22.
Children with Special Health Needs Program (CSHNP)
Visit Children with Special Health Needs Program Website
Children with Special Health Needs Program (CSHNP) provides care coordination, social work, nutrition, and other services for children with special health care needs age 0-21 years with chronic medical conditions. It serves children who have or may have long-term or chronic health conditions that require specialized medical care, and their families.
Early Intervention Services (EIS)
Visit Early Intervention Services Website
1-800-235-5477 All other Islands
EIS provides services to support the development of infant and toddlers from birth to age three.
View EIS Services
View EIS Eligibility
Visit Hi‘ilei Hawai‘i Website
Hi‘ilei Hawai‘i provides follow along with developmental screening and information for families who are interested in supporting their young child (Age 0-5) to reach his/her optimal development.
Helping Children Learn and Grow
Department of Education
Visit Department of Education Website
Hawaii State Department of Education, Office of Special Education Special education services are made available to any student ages 3 to 22 who demonstrates a need for specially designed instruction, after an eligibility determination.
View Conservatorship Forms
US Legal forms has forms available for download on conservatorship in Hawaii.
Transition to Adult Services
SPIN Transition Services
Visit SPIN Transition Services Website
SPIN Transition Services Beginning at age 14 (or younger if appropriate), your child’s IEP will include a focus on what courses are needed to match up to future goals. By age 16, the IEP will also include appropriate, measurable goals for after high school that are based on your child’s strengths and interests and on age-appropriate transition assessments. The plan should state what services are needed to transition successfully into college, employment and/or living in the community. Email [email protected].
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
Visit The ARC Website
The ARC in Hawaii is committed to helping Hawai’i’s people with intellectual disabilities secure the power to choose where and how they live, learn, work and play in the community.
Visit Access Surf Website
AccesSurf is a nonprofit creating community-based programs for anyone with a disability to enjoy the water.
Waimea Valley Park and Botanical Gardens
Visit Waimea Valley Park and Botanical Gardens Website
Waimea Valley Park and Botanical Gardens has a 3/4 mile paved, wheelchair accessible path that leads you to a swimming hole with a waterfall. At the waterfall, there are changing rooms, life jackets available for use, and lifeguards to assist with transfers, if needed, into the water. A great way for the whole family to participate in a safe, fun activity! We went and did this with our girls, and it is definitely something I would recommend to anyone going to Oahu!
Hawaii Rettsyndrome.org Families Facebook
View Hawaii Rettsyndrome.org Families Facebook Page
Click and ask to join!