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
    https://www.campharmon.org/
  • 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.
    http://www.johnkerrfoundation.org/
  • 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
    https://www.milb.com/fresno/community/junior-grizzlies
  • 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
    https://www.montereybayaquarium.org/visit/admission-tickets/tours/underwater-explorers/days-of-discovery
  • 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
    http://thepaintedturtle.org/
  • 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
    http://www.rideawave.org/?fbclid=IwAR2H_WVFogvVZJWhS3xsbD-o5mERUoZYpmpRU4lUUTDNCMuf4FoOq6IgKp0
  • 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
    https://www.challengesports.org/
  • 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
    http://ymsprr.com/

Automotive

  • Aero Mobility
    Accessible vehicle provider including rentals
    1001 N. Weir Canyon Rd, Anaheim, CA, 92807
    Website

Education

Advocacy Agencies

  • Sacramento Legal Unit
    Disability Rights California
    1831 K Street
    Sacramento, CA 95825-8219
    916-504-5800
    800-504-5802
    Website
    E-Mail: Contact information
  • Bay Area Legal Unit
    1330 Broadway
    Suite 500
    Oakland CA 94612
    510-267-1200
    510-267/-1201 FAX
    Website
  • Office of Patients’ Rights
    1831 K Street
    Oakland CA 94612
    510-504-5810
    510-504-5811 FAX
    Website
  • Southern California Area Legal Unit
    350 S Bixel Street
    Suite 290
    Los Angeles CA 90901
    213-213-8000
    213-213-8001 FAX
    Website
  • 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

Early Intervention Services (Infant and toddler)

  • Prevention and Children Services Branch
    Department of Developmental Services
    1600 9th Street, Room 310
    Sacramento, CA 95814
    916-654-2773
    Website
    E-mail: cdrouin@cde.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)

Serving: Northern California

Serving: Central California

  • Exceptional Parents Unlimited
    4440 N. First St.
    Fresno, CA 93726
    559-229-2000
    559-229-2956 FAX
    Website
    E-mail:  webform
  • Parents Helping Parents of San Francisco
    594 Monterey Blvd.
    San Francisco, CA 94127-2416
    415-841-8820
    E-mail: sfphp@earthlink.com

Serving: Southern California

  • TASK
    100 Cerritos Ave.
    Anaheim, CA. 92805
    714-533-8275
    714-533-2533 FAX
    Website
    E-mail: taskca@yahoo.com
  • Team of Advocates for Special Kids (TASK)
    4550 Kearny Villa Road, Suite 102
    San Diego, CA 92123
    858-874-2386
    858-874-0123 FAX
    Website
    E-mail:  taskca@yahoo.com

College Scholarships

  • California Association for Postsecondary Education and Disability (CAPED)
    California-specific scholarship program
    http://www.caped.io/scholarships/
  • 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.
    http://www.theorionfund.org/grants.php

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
  • State of California—Health and Human Services Agency Department of Health Care Services
    The purpose of this Policy Letter (PL) is to clarify and make more specific the Home and Community-Based Alternatives (HCBA) Waiver Agency Contract terms regarding the prioritization of eligible children and youth under the age of 21 for intake screening and enrollment into the HCBA Waiver.
    https://www.dhcs.ca.gov/services/ltc/Documents/HCBA-PL-19-001-Under-21-Priority-Enrollment-for-public-comment-5.3.19.pdf

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
  • SMUD medical baseline
    Rate discount program is designed to help customers who have higher electricity costs from running certain energy-intensive medical equipment.
    Apply for medical equipment discount (MED) rate
  • 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
  • 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
    http://www.ableadvocates.org/home.html
  • 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/
  • Lakeside Church
    Support for our Special Needs children, teens, and families during each of our weekend gatherings, as well as once a month at our Kidsfest Respite Night
    https://www.lakesidechurch.com/begin/kids/special-needs/
  • 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.dds.ca.gov/SupportSvcs/IHSS.cfm
  • 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 Clinic
    400 Parnassus Avenue, Second Floor
    San Francisco, CA 94143
    Phone #: (415) 353-3682
    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
    *PPMD CERTIFIED DUCHENNE CARE CENTER
    277 Biomedical Sciences
    615 Charles E. Young Dr. S.  Los Angeles, CA 90095
    Phone: 310-983-3402
    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 

What California-specific resources would you like to add or update? Email resources@parentprojectmd.org