Connecting with CA Families
Connect with California Duchenne Families on Facebook through our Connect Program. You will need to request to be added to the group first.
Accessibility and Recreation
Creative
- Sweet Dreams Foundation
Improve the quality of life for children who are battling a life threatening disease through the creation of their Dream bedroom.
http://sweet-dreams.org/
Recreation
- Access Adventure (Fairfield)
Unique program that uses wheelchair accessible horsedrawn carriages to provide open space recreation and wilderness access for people living with the challenges of disability
Website - Access Leisure (Sacramento Parks & Rec)
Website - AmpSurf
Non-profit organization made up of amputees, veterans and friends and family of the disabled that provides surf camp.
Website - Axis Dance Company (Oakland)
Dance classes for disabled children & mixed ability dance troupe
Website - Bay Area Accessible Trails
A list of accessible trails in the San Francisco Bay Area.
Website - BORP (Bay Area sports)
Power Soccer
Website - California State Parks Disabled Discount Pass
For permanently disabled persons, this pass entitles the bearer to a 50% discount for vehicle day-use, camping and boat use fees at California State parks operated units (except Candlestick SRA). Cost is $3.50 for a Lifetime Pass.
Website - Camp Harmon
Offering camping opportunities to children with disabilities
Website - City of Long Beach – Accessible Beaches
Find these beach access mats at Alamitos, Mother’s, and Granada beach. - Disabled Sports USA (Sacramento & Truckee/Tahoe areas)
Website - Independence Trail (off Highway 49, 7 miles North of Nevada City)
The nation’s first wheelchair accessible wilderness trail and follows the path of gold rush era flumes. From the trailhead you can travel approximately 1.5 miles either east or west. Both directions are level and shady and offer sweeping views from high above the river.
Website - The John Kerr Foundation
The Foundation is again proud to present its Life-Enhancing Summer Retreat for young adults with Muscular Dystrophy (ages 16-22). This 4-day Retreat provides opportunity for a select group of young adults with MD a chance to learn valuable life skills while enjoying the great outdoors.
Website - The Junior Grizzlies
Non-competitive baseball league for athletes of all ages with mental and physical disabilities, is the flagship program of the Fresno Grizzlies Community Engagement Department
Website - McAlpine Lake (Central Valley)
Centrally located between San Jose, Monterey, Salinas and the California Central Valley, McAlpine Lake is accessible all around the whole lake, fishing tourneys and camping available year around. It is small but worth a little fresh air.
Website
- Monterey Bay Aquarium
Days of Discovery program for children ages 8-14 to participate in an aquatic experience.
Website - The Painted Turtle
The Painted Turtle seeks to reach beyond illness, to inspire children with life-threatening diseases to become their greater selves. It is our mission to provide a year-round, life-changing environment for these children and their families – one that allows children to participate in an authentic camp experience by supporting their medical needs and offers their families care, education, and respite.
Website - Rails to Trails Conservancy Trail Link (Wheelchair Accessible Trails in California)
Non-profit organization whose mission it is to create a nationwide network of trails from former rail lines and connecting corridors to build healthier places for healthier people.
Website
- Ride A Wave
Ride a Wave’s mission is to give children with special needs the chance to feel the thrill of riding a wave and experience a safe, fun-filled day at the beach
Website - Rim of the World Special Athletics Program
The Rim of the World Special Athletes Foundation’s primary objectives and purposes are to provide a recreational experience that is safe and positive for adaptive individuals. The organization provides all-year sports activities for adaptive athletes. There are fees and a lengthy online application.
Website - River Cats Independence Field (Sacramento)
Fully accessible baseball field
Website - Sacramento Challenge Sports
Provides year round team sports for school age athletes with developmental and/or physical disabilities
Website - Shared Adventures of Santa Cruz
Shared Adventures offers many adaptive adventure activities including kayaking, art classes, surfing, trips to local venues, sailing, indoor rock-climbing, river rafting, dance parties with live music, archery, camping trips, whale watching, bowling, horseback riding, table tenniss and much more.
Website - Special Olympics Northern California
Website - Yosemite Mountain Sugar Pine Railroad
Handicap Accessible train, must call in advance to let them know you are coming
Website
Automotive
- Aero Mobility
Accessible vehicle provider including rentals
1001 N. Weir Canyon Rd, Anaheim, CA, 92807
Website
Education
Advocacy Agencies
- Disability Rights California
1831 K Street
Sacramento, CA 95825-8219
916-504-5800
800-504-5802
Website
Contact information - Yellow Pages for Kids -California Resources
Provides extensive resources to learn about and navigate special education, including state listings of Parent Training and Information Centers.
http://www.yellowpagesforkids.com/help/ca.htm
Department of Education
- Special Education Division
515 L Street, Suite 270
Sacramento, CA 95814
916-445-4729
Website
Contact information
Early Intervention Services (Infant and toddler)
- Prevention and Children Services Branch
Early Start
Department of Developmental Services
1600 9th Street, Room 310
Sacramento, CA 95814
916-654-2773
Website
E-mail: earlystart@dds.ca.gov
Early Intervention Services (Ages 3 to 5)
- Department of Education
Chris Drouin, 619 Coordinator
1430 N Street
Sacramento, CA 95814
916-327-3698
Website
E-Mail: cdrouin@cde.ca.gov
PTI (Parent Training and Information Centers)
- Support for Families of Children with Disabilities
2601 Mission #710
San Francisco, CA 94110-3111
415-282-7494
415-282-1226 FAX
Website
E-mail: info@supportforfamilies.org - Fiesta Educativa (CPRC)
3839 Selig Place
Los Angeles, CA 90031
323-221-6696
323-221-6699 FAX
Website
E-Mail: info@fiestaeducativa.org
Serving: Northern California
- Matrix
94 Galli Drive, Suite C
Novato, CA 94949
415-884-3535
415-884-3555 FAX
800-578-2592
Website
Contact information - Parents Helping Parents of Santa Clara
3041 Olcott St.
Santa Clara, CA 95054-3222
408-727-5775
408-727-7655 TDD
408-727-0182 FAX
Website
E-mail: info@php.com
Serving: Central California
- Exceptional Parents Unlimited
4440 N. First St.
Fresno, CA 93726
559-229-2000
559-229-2956 FAX
Website
Contact information - Parents Helping Parents of San Francisco
594 Monterey Blvd.
San Francisco, CA 94127-2416
415-841-8820
Website
E-mail: sfphp@earthlink.com
Serving: Southern California
- Team of Advocates for Special Kids (TASK)
100 Cerritos Ave.
Anaheim, CA. 92805
714-533-8275
714-533-2533 FAX
Website
E-mail: task@taskca.org
College Scholarships
- California Association for Postsecondary Education and Disability (CAPED)
California-specific scholarship program
Website - The Orion Fund
Each year The Orion Fund awards grants to California college students with serious illness or injury. If you are in college, under the age of 30, and have a serious medical condition affecting your ability to stay in school, then The Orion Fund can help. Grants generally range from $300 to $3000.
Website
Health and Well Being
State Benefit Programs
- Disability Benefits 101
This website provides tools and information on employment, health coverage, and benefits for the state of California
Website - DOR (Department of Rehabilitation)
DOR administers the largest vocational rehabilitation and independent living programs in the country
https://www.dor.ca.gov/ - California Children’s Services (CCS)
Through this state-wide program, children up to 21 years old can get the health care and services they need. CCS will connect you with doctors and trained health care people who know how to care for your child with special health care needs.
Website - Health Insurance Premium Payment Program
The Health Insurance Premium Payment (HIPP) program is a voluntary program for qualified beneficiaries with full scope Medi-Cal coverage. HIPP approved Medi-Cal eligible beneficiaries shall receive services that are unavailable from third party coverage and offered by Medi-Cal. The program may pay health insurance premiums for eligible Medi-Cal participants when deemed cost effective.
Website - Kids’ Waivers, California Waiver Information
Due to the difficulty in navigating California’s Department of Health Care Services’ (DHCS) website regarding available Medicaid Waivers covering children, visit the Kid’s Waiver website for general information regarding these programs. Each program description includes links to the DHCS website for more specific information.
Website
Equipment
- Able Closet
Non-profit organization that was founded on the vision of providing children with special needs a resource for borrowing needed equipment. Obtaining rehabilitative equipment can be costly and time consuming.
http://www.ablecloset.com/
Financial Support
- Jack’s Helping Hand
Financial assistance for families in San Luis Obispo County.
https://www.jackshelpinghand.org/contact/ - PG&E Medical Baseline Allowance
For residential customers who have special energy needs related to a medical condition. Qualification for this program is not income based.
Apply for Medical Baseline Allowance - United Healthcare Children’s Foundation
Medical Grants to and for families who have children with medical needs not covered or not fully covered by their commercial health benefit plan.
Website
- Variety – the Children’s Charity
Grants for equipment (wheelchairs, adaptive bikes, lifts, etc)
Main website: http://www.usvariety.org/
Northern CA Program Page: http://www.varietync.org/how-we-help - Walking Strong
Walking Strong Assistance Program helps Duchenne families with their over-bearing medical needs that are most often not covered by insurance. To date, we have provided families with life-changing items such as a handicap accessible van, service dogs, Hoyer lifts, in-home ramps, alternative therapies, medical travel expenses, and on-line training courses for older Duchenne teens to help provide them with a career. https://walkingstrong.org/ - Wheel to Walk Foundation
The Wheel to Walk Foundation is a non-profit organization that helps children with disabilities, 20 years and younger, obtain medical equipment or services not provided by insurance.
Website
Wellness
- A Touch of Understanding
Provides disability awareness programs designed to educate a new generation to understand the challenges associated with disabilities and to accept and respect all individuals.
https://touchofunderstanding.org/ - Able Advocates
To provide appropriate resources and support to parents and caregivers of children with special needs in order to assist them with navigating the health care system with greater ease, and to do all things appropriate to further such purpose
Website - Community Resource Project INC
Mission is to improve opportunities for people in need through energy efficiency, health, and education
https://www.communityresourceproject.org/ - Family Voices of California
A statewide collaborative of parent-run centers working to ensure quality health care for children and youth with special health care needs
http://www.familyvoicesofca.org/ - Parents Helping Parents
Emotional support, education and training on navigating medical, legal, social service and educational systems, children’s workshops (including siblings)
http://www.php.com/ - State of California Department of Development Services
In-Home Supportive Services (IHSS) provides personal care and domestic services to persons who are aged, blind or disabled and who live in their own homes
https://www.cdss.ca.gov/inforesources/ihss - Valley Children’s Heath Care
Valley Children’s network of pediatric specialty and primary care providers is dedicated to providing the best care close to home for the children of the Central Valley.
https://www.valleychildrens.org/
Clinics
- Children’s Hospital Los Angeles (CHLA)
*PPMD CERTIFIED DUCHENNE CARE CENTER
4650 Sunset Blvd. Los Angeles, CA 90027
Phone: 323-660-2450
Website - Forbes Clinic
2324 Sacramento Street, Suite 150
San Francisco, CA 94115
Phone #: (415) 600-3604
Website - UCSF Benioff Children’s Hospital Neuromuscular Clinic
1825 4th Street, 6A
San Francisco, CA 94158
New and complex patient care: 855-722-8273
Website - Stanford Clinic
*PPMD CERTIFIED DUCHENNE CARE CENTER
300 Pasteur Drive
Palo Alto, CA 94304
Phone #: (650) 723-5184
Website - Center for Duchenne Muscular Dystrophy at UCLA Neuromuscular Clinic
*PPMD CERTIFIED DUCHENNE CARE CENTER
300 UCLA Medical Plaza Suite B200
Los Angeles, CA 90095
Phone: 310-405-9824
Website - U.C. Davis Medical Center
*PPMD CERTIFIED DUCHENNE CARE CENTER
Physical Medicine & Rehabilitation Clinic
Lawrence J. Ellison Ambulatory Care Clinic
Phone #: (916) 734-7041
Website
