California Resources

Family Empowerment Representatives | Treatment and Research Centers |  State Agencies CA  |  Parent Recommendations


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.

Paige Nues, Rettsyndrome.org Staff,  (Northern CA/Bay Area ) pnues@rettsyndrome.org1-510-499-3858

Jenny Mosca (Family Empowerment Team Co- Chair)  Vista, CA  jennymosca@gmail.com 1-760-492-3989

Daniel Warner (Family Empowerment Team Co-Chair) Foothill Ranch, CA  warnerd@valassis.com 1-949-521-2665

Sherri Brady (Southern CA), volunteer Family Empowerment Representative mom2LCM@gmail.com1-562-619-0109 or 1-512-745-1980

Joanne Ralston,  volunteer Family Empowerment Representative jralston1@hotmail.com  1-412-337-4537 

Melinda Lancaster, volunteer Family Empowerment Representative, Southern CA  m3ml@hotmail.com  1-774-368-3589  


Treatment and Research Centers


Clinics

USC/UCEDD Rett Syndrome Clinic

 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 1:00-5:00pm.

Clinical Trials

Please contact the trial site for current enrollment status.

Natural History Study

 USCF Benioff Children's Hospital

 1-925-979-4055

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 

Rady Children's Hospital San Diego Rett Clinic 

 1-858-966-6458    1-853-684-8822   NHS Information

The Pediatric Neurology Department at Rady Children's Hospital in San Diego is led by Dr Neul. He is a physician scientist who sees patients with Rett syndrome and conducts clincial research. For NHS information email jneul@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 informatin, conact Ashley Lucchese, Marriott Sales Executive Ashley.Lucchese@Marriott.com

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

 

Evaluation of the Efficacy, Safety, and Tolerability of Sarizotan in Rett Syndrome With Respiratory Symptoms

This study evaluates the safety, tolerability and efficacy of Sarizotan in reducing respiratory abnormalities in Rett syndrome.  Eligibility criteria include girls or boys age 13 or above.

University of California, San Diego

 1-925-979-4055

For study information, contact Karen Ditslear   kditslear@ucsd.edu

 

 

Biobanking of Rett Syndrome and Related Disorders

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


State Agencies - California


 Local Service Agencies

California DSS Regional Centers

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.

In Home Supportive Services (IHSS)

IHSS will help pay for care so that disabled individuals can stay in their homes. You must have Medi-Cal to apply for IHSS.

 California Children's Services (CCS)

Through this program, children up to 21 years old may qualify for medical based therapy or equipment.

Local CCS Office

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


Handicap Placard

California DMV

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.


State Medicaid

California Department of Health Care Services (DHCS)

DHCS Medi-Cal waivers are programs under Medi-Cal that provide additional services to specific groups of individuals, limit services to specific geographic areas of the state, and provide medical coverage to individuals who may not otherwise be eligible under Medicaid rules. 

Medi-Cal

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)

 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)

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

Conservatorship is a legal proceeding in which an individual or agency is appointed by a court to be responsible for a person who needs assistance in activities of daily living. Families should check with their child's Regional Center, high school and county Superior Court Probate Office for information on low/no cost Self Help Clinics. This process should begin approximately 6 months before the 18th birthday.

Disability Rights California

1-800-776-5746

 Disability Rights California provides information and disability related reasonable accommodations when requested.

California Courts

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


Transition to Adult Services

Local School Districts/Transition Planning

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

CDE has information to help you navigate transition planning.


Parent Recommendations

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.

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

 Both are associated with Children's Hospital Los Angeles and the Rett Clinic.

Dr. Jeff Neul

 Dr. Nuel is the Division Chief of the neurology department at Rady Children's Hospital and Director of the San Diego Rett Clinic.

ClinicalTrials.gov 

 This site has a comprehensive listing of clinical studies involving Rett Syndrome patients or families.


Therapy ( PT, OT, Speech, Hippotherapy and Aquatherapy)

 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 

1-760-731-9168

SoCal Equestrian Directory

National Center for Equine Facilitated Therapy 

1-650-851-2271   info@nceft.org

OT Outdoors  

OT 1-858-945-3243  PT 1-858-442-1865

Xenophon Therapeutic Riding Center  

1-925-377-0871

Children's Hospital of Orange County Rehabilitation Servies 

1-714-509-4220

Aquatic Therapy and Wellness Center 

1-310-537-2224

Special Needs Aquatic Program  

Berkeley1-510-495-4102  Los Altos1-650-736-8626

Innovative Therapy 4 Kids (IT4K)

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

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

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

Wheelchair Accesibile Trails

Traillink lists accessible trails throughout the state.

Accessible Campsites in California

California State Beaches

Many beaches have wheelchairs designed for use on sand. Availability is limited.

United States Adaptive Recreation Center (USARC)

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

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.

Shared Adventures

Located in Santa Cruz, they have an impressive array of programs for special needs children and adults. In July, they host their annual Day on the Beach, which offers adaptive or assisted kayaking, canoe rides, scuba diving and flotation. You can also rent beach wheelchairs.

Ride a Wave

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

The Challenger division enables children ages 4-18 with physical disability to be able to participate.


 Other Parent Recommendations

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.

Medical Baseline Discount

A Medical Baseline Discount is offered by many utility companies that will allow you a  baseline useage without charge or offer discounts. If a Speech Generating Device, or other power equipment is in the home, you may qualify for bi-pass consideration during Brown-Outs. Check with your local gas and electric provider.

Funding Sources 

To fund medical needs, research other community resources and philanthropy groups such Rotary International, Lion's Club, Kiwani's and Make-A-Wish.

The Bridge School

The Bridge School offers camp programs to AAC users ages 5-17 and a camp for siblings that allows kids to meet others who have a sibling with a disability.

Maya's Music Therapy Fund

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)

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

(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

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

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.  info@georgemark.org

Via Services

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

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.