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
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
Office of Developmental Disabilities Services (ODDS)
ODDS offers supports to children and families ranging from in home family support, intensive in-home supports and 24-hour services in foster care or residential placement. Services offered have specific eligibility standards and are usually accessed through the local Community Developmental Disabilities Programs (CDDP).
Oregon Home Care Commission
The Oregon Home Care Commission is a central state-sponsored registry for Homecare and Personal Support Workers (PSW’s) directed to work with culturally diverse organizations and groups to recruit, train, and certify homecare workers who desire to become community health workers and personal health navigators. They also administer a program to allow private pay consumers to purchase homecare services from the Commission through its Registry.
The Dream Factory of Oregon
The Dream Factory is the largest children’s wish-granting organization that does not limit its mission to children who have life-threatening illness. The organization believes children with chronic illnesses and disorders also suffer from substantial emotional and physical pain.
Medically Involved Children's Program (MICP)
MICP services are exclusively intended to enable a child who meets the nursing facility level of care to return to the family home, or remain at the family home, with specialized supports and services. MICP services preserve the capacity of a parent to care for their child, assure the health and safety of the child within the family home, and enable a child who has been separated from their family due to their health and medical care needs to return to the family home to prevent out of home placement. You can apply by phone.
Medically Fragile Children's Services (MFCS)
MFCS provides waiver case management, environmental safety modifications, family training, individual goods and services, special diets, specialized medical supplies, for medically fragile individuals ages 0-17. You can apply by phone.
Transition to Adult Services
Family And Community Together (FACT)
Family And Community Together (FACT) is a family leadership organization based in Oregon for individuals and their families experiencing disability, working collaboratively to facilitate positive change in policies, systems, and attitudes, through family support, advocacy, and partnerships.
To apply for a handicap placard, you must complete the Application for Family Parking Permits for Disabled Persons (Form 265FPP) or the Application for Program Parking Permit (Form 265PP), and apply by mail to DMV Driver Issuance Unit, 1905 Lana Ave NE, Salem, OR 97314. Family permits are valid for 8 years after the date of issuance.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Shriners Hospital for Children - Portland
Visit Shriners Hospital for Children—Portland Website
Shriners Hospital for Children- Portland provides the highest quality care for a wide range of orthopedic and neuro-musculoskeletal disorders and diseases. Located on the campus of Oregon Health Sciences University, they have close affiliations with world-class doctors and researchers who are committed to continuously advancing orthopedic treatment. They also provide a variety of recreational activities throughout the year including swimming.
Legal Resources & Information
Disability Rights Oregon (DRO)
Disability Rights Oregon (DRO) is Oregon’s designated Protection & Advocacy (P&A) System. DRO works to uphold the legal rights of people with disabilities. DRO promotes Opportunity, Access and Choice for individuals with disabilities. We assist with legal problems directly related to disabilities.
Oregon Adaptive Sports
Camp Attitude is a free, weeklong, wheelchair accessible camp for the whole family. Their mission is to promote active participation in a safe & inclusive outdoor environment. They strive to encourage positive attitudes through a quality camping experience. Helping people reach their dreams and overcoming unusual obstacles and challenges is central to their mission.
Camp Kiwanis At Mt. Hood
Camp Kiwanis At Mt. Hood Kiwanis Camp empowers children and adults with disabilities. For over 80 years, they have partnered with the U.S. Forest Service to provide individuals with disabilities an outstanding overnight recreational opportunity in the Mt. Hood National Forest. They offer eight week-long sessions of residential summer camp, providing campers with a one-on-one camper/counselor ratio. They also offer programming throughout the year at their fully accessible 22-acre campsite.
Oregon Rettsyndrome.org Facebook page
Wheel to Walk Foundation
The Wheel to Walk Foundation is a non-profit organization that helps children with disabilities, 20 years of age and younger, obtain medical equipment or services not provided by insurance. They purchase items such as therapy tricycles, wheelchairs and wheelchair modifications, gait trainers, adaptive strollers, shower chairs, patient lifts, special beds, orthotics, communication devices, and speech therapy. They strongly believe that no child or young adult with special needs should go without items that could improve the quality of daily life.
The intent of the Sidney and Lillian Zetosch Fund is to buy equipment for children with special health needs, to help those children succeed in school. OCCYSHN receives an annual distribution of these funds from the Oregon Community Foundation.
Telecommunication Devices Access Program (TDAP)
Oregon Public Utility Commission (PUC) Telecommunication Devices Access Program (TDAP) loans adaptive devices at no cost with no income restrictions to Oregonians who cannot access the telephone through conventional means. This includes Speech Generating Devices such as Augmentative Communication Devices and iPads.
Magic Wheelchair makes costumes for children in wheelchairs. Children choose what they want to be for Halloween, a parade, a celebration, or another big day and then the artists and volunteers at Magic Wheel make a custom fit costume for the child’s specific wheelchair.
Children's Healing Art Project (CHAP)
Children’s Healing Art Project (CHAP) brings the healing power of art to children + families facing medical challenges through a mobile team of teaching artists working in a partnership with hospitals, community organizations and schools. At CHAP, children are known for their creativity and ingenuity—not by their disease, diagnosis or disability. Lifetime free membership.
Swindells Care Notebook and Organizer
This Care Notebook functions as a personal health record and helps parents coordinate the complex records of their child’s care, services and providers. The notebook is available in English and Spanish. The Swindells Resource Center staff offers training to help families get started with the Care Notebook.