Oregon

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
sbrant@rettsyndrome.org  1-913-221-8157

Family Empowerment Representative

Joey Razzano, volunteer Family Empowerment Representative,  Portland OR
joey.razzano@comcast.net 1-503-460-3035 (home) 1-503-998-5096 (cell/text)

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.

Clinical Trials

Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.

Clinics

Rett Syndrome Program/Oregon Health and Sciences University

Visit Rett Syndrome Program/Oregon Health and Sciences University Website
1-800-452-3563
1-503-494-8095
Rett Syndrome Program at Child Development and Rehabilitation Center of Oregon Health and Sciences University Clinic director is Dr. Mario Peterson who has expertise in genetics and pediatrics.

State Agencies & Resources

Local Service Agencies

Office of Developmental Disabilities Services (ODDS)

Visit Office of Developmental Disabilities Services (ODDS) Website
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).

County Assistance Community Developmental Disabilities Program (CDDP)

Visit County Assistance Community Developmental Disabilities Program (CDDP) Website
Access to K PLAN services

Oregon Home Care Commission

Visit Oregon Home Care Commission Website
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

Visit The Dream Factory of Oregon Website
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.

State Medicaid

Medically Involved Children's Program (MICP)

Visit Medically Involved Children’s Program (MICP) Website
1-971-673-2990
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)

Visit Medically Fragile Children’s Services (MFCS) Website
1-971-673-3000
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.

Behavior Program

Visit Behavior Program Website
1-971-673-2995
The Behavior Program provides waiver case management, environmental safety modifications, family training, individual directed goods and services, special diets, specialized medical supplies for individuals with ID/DD ages 0-17. You can apply by phone.

Education

Disability Rights Oregon

Visit Disability Rights Oregon Website
Disability Rights Oregon provides advocacy services for Oregonians who are having an issue with education, including special education and transition services.

Conservatorship

The Arc Oregon

Visit The Arc Oregon Website
The Arc Oregon, together with its network of members and affiliated chapters, advocates for the rights and full community participation of all children and adults with intellectual and developmental disabilities.

Transition to Adult Services

Family And Community Together (FACT)

Visit Family And Community Together (FACT) Website
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.

Handicap Placard

Oregon DMV

Visit Oregon DMV Website
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.

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

Therapy

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)

Visit Disability Rights Oregon (DRO) Website
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.

Recreation

Oregon Adaptive Sports

Visit Oregon Adaptive Sports Website
Oregon Adaptive Sports offers a wide variety of sports, such as kayaking, skiing and snowboarding.

Camp Attitude

Visit Camp Attitude Website
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

Visit Camp Kiwanis At Mt. Hood Website
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.

Additional Resources

Oregon Rettsyndrome.org Facebook page

Click and ask to join!

Facebook Strollathon Page

Visit Facebook Strollathon Page
Get in touch with other families and attend this annual event.

Shutterfly Share Site for Portland Stroll

Visit Shutterfly Share Site for Portland Stroll
To view pictures from the past years’ strolls.

Wheel to Walk Foundation

Visit Wheel to Walk Foundation Website
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.

Zetosch Funds

Visit Zetosch Funds Website
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)

Visit Telecommunication Devices Access Program (TDAP) Website
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

Visit Magic Wheelchair Website
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)

Visit Children’s Healing Art Project (CHAP) Website
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

Visit Swindells Care Notebook and Organizer Website
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.