California

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

Paige Nues,- Family Empowerment Director, Rettsyndrome.org (Northern CA/Bay Area)
pnues@rettsyndrome.org 1-510-499-3858

Jenny Mosca – volunteer Family Empowerment Representative Co-Chair, Vista, CA
jennymosca@gmail.com 1-760-492-3989

Daniel Warner – volunteer Family Empowerment Representative Co-Chair, Foothill Ranch, CA warnerd@valassis.com 1-949-521-2665

Sherri Brady – volunteer Family Empowerment Representative, Southern CA,
mom2LCM@gmail.com 1-562-619-0109 or 1-512-745-1980

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.

Natural History Study

Visit USCF Benioff Children’s Hospital Website
1-510-595-5458
Katie’s Clinic for Rett Syndrome and Related Disorders has appointments available the second Friday of each month.  For appointments or NHS information, contact Erica Robertson ERobertson@mail.cho.org.

Natural History Study

Rady Children’s Hospital San Diego Rett Clinic
Visit Rady Children’s Hospital San Diego Rett Clinic Website
1-858-966-6458    1-853-684-8822   NHS Information
The Rett syndrome clinic at Rady Children’s Hospital in San Diego is led by Dr. Richard Haas. He is a physician-scientist who sees patients with Rett syndrome and conducts clinical research. For NHS information, email Karen Ditslear kditslear@ucsd.edu.

Travel Assistance for NHS Sites
1-781-333-1593

Marriott is working on establishing discounts for hotels near our clinical trial sites. For more information, contact Ashley Lucchese, Marriott Sales Executive Ashley.Lucchese@Marriott.com.

Nearby hotels include: Residence Inn San Diego Mission Valley & Residence Inn San Diego Downtown.

Biobanking of Rett Syndrome and Related Disorders

Visit Biobanking of Rett Syndrome and Related Disorders Website
The purpose of this study is to advance understanding of the natural history of Rett syndrome (RTT), MECP2-duplication disorder (MECP2 Dup), RTT-related disorders including CDKL5, FOXG1, and individuals with MECP2 mutations who do not have RTT. Samples with DNA will be collected.

USCF Benioff Children’s Hospital, Oakland, CA
1-925-979-4055
For study information, contact Erica Robertson ERobertson@mail.cho.org.

University of California, San Diego
1-858-246-2288
For study information, contact Karen Ditslear kditslear@ucsd.edu.

Clinics

USC/UCEDD Rett Syndrome Clinic

Visit USC/UCEDD Rett Syndrome Clinic Website 
1-323-361-3849
USC/UCEDD Rett Syndrome Clinic Located at Children’s Hospital Los Angeles, this comprehensive clinic specializes in the diagnosis and care of individuals with Rett syndrome. Appointments available the second and fourth Wednesdays of each month from 1:00-5:00 pm.

Rady Children's Hospital San Diego Rett Clinic

Visit Rady Children’s Hospital San Diego Rett Clinic Website
1-858-966-6458    1-853-684-8822   NHS Information
The Rett syndrome clinic at Rady Children’s Hospital in San Diego is led by Dr. Richard Haas. He is a physician-scientist who sees patients with Rett syndrome and conducts clinical research. For NHS information, email Karen Ditslear kditslear@ucsd.edu.

State Agencies & Resources

Local Service Agencies

California DSS Regional Centers

Visit California DSS Regional Centers Website
DSS California has Regional Centers in 40 offices throughout the state that serve individuals with developmental disabilities. Your local Regional Center will help get your child qualified for services. They can also help if you have questions regarding your child’s development.

California Children's Services (CCS)

Visit California Children’s Services (CCS) Website
Through this program, children up to 21 years old may qualify for medical based therapy or equipment.

Local CCS Office

Visit Local CCS Office Website
Contact your Local CCS office to begin enrollment or for more information.

State Medicaid

Medi-Cal

Visit Medi-Cal Website
Medi-Cal provides services to developmentally disabled persons who are Regional Center consumers (see DSS info under Local Service Agencies).  Medi-Cal can act as a primary or secondary insurance policy under the Developmentally Disabled (DD)Waiver program, regardless of financial situation. You can apply for the DD Waiver through your Regional Center case worker. You must have at least one Regional Center service (i. e. Respite Care) to apply for the Waiver Program.

Early Intervention

Department of Developmental Services (DDS)

Visit Department of Developmental Services (DDS) Website
1-800-323-4769
The DDS Regional Center can help get your child assessed and is the contact to get your child enrolled in Early Intervention services in California.

Education

California Department of Education (CDE)

Visit California Department of Education (CDE) Website
CDE starts the Individualized Education Program process which involves assessments to place your child in a program in the district.  Contact your local school district approximately 6 months before your child turns 3.

Conservatorship

Disability Rights California

Visit Disability Rights California Website
1-800-776-5746
Disability Rights California provides information and disability related reasonable accommodations when requested.

California Courts

Visit California Courts Website
California Courts website describes the process and contains forms needed to begin the conservatorship process.

Transition to Adult Services

Local School Districts/Transition Planning

Visit Local School Districts/Transition Planning Website
Transition planning ensures that a student continues to receive the support needed from appropriate agencies, even if the plan is not for the individual to attend traditional college.  Transition planning must begin by the first IEP held after the student reaches age 16.

California Department of Education

Visit California Department of Education Website
CDE has information to help you navigate transition planning.

Handicap Placard

California DMV

Visit California DMV Website
The California DMV requires a doctor’s signature on the Application for Disabled Person Placard. The application can either be returned to your local DMV office or to your local AAA office, if you are a member.

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

Medical Professionals

Dr. Mary Jones

Dr. Mary Jones is a pediatrician and director of Katie’s Clinic for Rett Syndrome and Related Disorders at UCSF Benioff Children’s Hospital Oakland. Click here to learn more about Dr. Mary Jones.

Dr. Larry Yin (Developmental Peds) & Dr. Arthur Partikian (Pediatric Neurology)

Click here to learn more about Dr. Yin and Dr. Partikian
Both are associated with Children’s Hospital Los Angeles and the Rett Clinic.

Therapy

Insurance Coverage

For insurance coverage, check with your private insurance first.  Next, check with Medi-Cal. They may either pay for therapy or cover copays from a private insurance policy. CCS would be the next place to check to get therapy services covered.

The Shea Center for Therapeutic Riding

1-949-240-8441

Reins

Visit Reins Website
1-760-731-9168

SoCal Equestrian Directory

View SoCal Equestrian Directory

National Center for Equine Facilitated Therapy

Visit National Center for Equine Facilitated Therapy Website
1-650-851-2271
info@nceft.org

OT Outdoors

Visit OT Outdoors Website
OT 1-858-945-3243
PT 1-858-442-1865

Xenophon Therapeutic Riding Center

Visit Xenophon Therapeutic Riding Center Website
1-925-377-0871

Children's Hospital of Orange County Rehabilitation Services

Visit Children’s Hospital of Orange County Rehabilitation Services Website
1-714-509-4220

Special Needs Aquatic Program

Visit Special Needs Aquatic Program Website
Berkeley 1-510-495-4102
Los Altos 1-650-736-8626

Innovative Therapy 4 Kids (IT4K)

Visit Innovative Therapy 4 Kids Website
1-760-438-3300
IT4K provides therapeutic services (PT, OT, and Speech) that treat each child as an individual based on symptoms, rather than treating by diagnosis. IT4K can also provide educational advocacy services. IT4K is a fee for service facility and also accepts clients who are funded by the San Diego Regional Center and Orange County Regional Center.

Recreation

Disneyland & Disney's California Adventure

Visit Disneyland & Disney’s California Adventure Website
Disneyland and Disney’s California Adventure are very accessible parks to visit. Guides for guests with disabilities are available at the parks to help make your visit as enjoyable as possible.

Legoland

Visit Legoland Website
Most attractions are handicapped accessible and detailed health restrictions are posted at each ride.

Wheelchair Accessible Trails

Visit Wheelchair Accessible Trails Website
Traillink lists accessible trails throughout the state.

Accessible Campsites in California

View Accessible Campsites in California

California State Beaches

Visit California State Beaches Website
Many beaches have wheelchairs designed for use on sand. Availability is limited.

United States Adaptive Recreation Center (USARC)

Visit United States Adaptive Recreation Center (USARC) Website
USARC was founded to give people with disabilities a chance to ski in Big Bear. The Southern California Rett group generally plans a trip in March.

Achieve Tahoe

Visit Achieve Tahoe Website
Achieve Tahoe is based in North Lake Tahoe and uses specialized adaptive equipment and teaching methods to accommodate almost everyone with every type of disability.

Ride a Wave

Visit Ride a Wave Website
Ride a Wave gives children with special needs the opportunity to surf and experience a fun day at the beach in a safe environment.

Little League Challenger Division

Visit Little League Challenger Division Website
The Challenger division enables children ages 4-18 with physical disability to be able to participate.

Additional Resources

California Rettsyndrome.org Facebook Page

Visit California Rettsyndrome.org Facebook Page

This is a private forum, moderated by Rettsyndrome.org and a safe place for you to ask advice and share information. This is a closed group; ask to join.

Funding Sources

Maya's Music Therapy Fund

Visit Maya’s Music Therapy Fund Website
Maya’s uses music to engage special needs individuals through singing, playing instruments, listening to music, songwriting, discussion of lyrics, improvisation, moving to music and music-imagery exercises.

Center for Accessible Technology (CforAT)

Visit Center for Accessible Technology Website
CforAT works directly with individuals with disabilities to meet complex assistive technology needs. CforAT also works with school districts to assist students and provide training to staff.

Assistive Technology Exchange Center

Visit Assistive Technology Exchange Center Website
(ATEC) Orange County ATEC has a library of equipment that can be checked out to help your child communicate. They provide evaluations, set up and training of AAC devices.

San Diego Assistive Technology Center

Visit San Diego Assistive Technology Center Website
SDATC can offer evaluations and training of AAC equipment. They also have a toy library and offer advocacy services to help with funding for speech generating devices.

J&J Artificial Limb and Brace

Visit J&J Artificial Limb and Brace Website
1-858-613-0958
This is a pediatric and adult orthotic and prosthetic care center. They specialize in all forms of bracing for patients with special neurological and orthopedic disorders. They have 3 office locations in Poway, Oceanside and Mission Viejo.

George Mark Children's House

1-510-346-1285
George Mark’s specializes in caring for children and young adults with complex medical conditions. They welcome children up to the age of 25. Email info@georgemark.org.

Via Services

Visit Via Services Website
Main Office 1-408-243-7861
West Campus 1-408-867-1115
Via offers year-round camping experiences to children entering 5th through 12th grade. They also offer OT and Speech service to children up to age 10 in their Santa Clara office. Via West is a residential respite care program.

The Lanterman Act

View The Lanterman Act
This law states that people with developmental disabilities and their families have the right to get the services and supports they need to live like individuals without disabilities. This site outlines the rights, how to obtain services and supports, and how to use the individualized program plan to get needed services.