For emergency guidelines and surgery questions for patients with Duchenne:
Standards of Care for Duchenne Muscular Dystrophy Published
Neuromuscular Researchers and Clinicians have written a comprehensive statement on Care Guidelines published
in the medical literature. This information is useful for understanding the multiple systems of the body
affected by DMD and how care providers should treat DMD boys over the course of their lives. Excellent
guides for new families detailing many aspects of the disease process is downloadable from the Treat-NMD website.
Education Matters is a helpful booklet provided by PPMD that has valuable information for Patients and teachers of children with Duchenne:
Please download the pdfs of the standard of care documents here:
Zimmer's Children's Museum
A hands-on, interactive museum designed for children 0-8 years old. Also look at their "Open
door days" for special programming for children with special needs or Autism.
6505 Wilshire Blvd., #100
Los Angeles, CA 90048
http://www.zimmermuseum.org/
Kidspace Children’s Museum
An interactive museum that promotes exploration both indoors and outdoors. Wheelchairs available for
rental as well.
480 North Arroyo Blvd
Pasadena, CA 91103
http://www.kidspacemuseum.org/
California Science Museum
Admission to the Science Center's exhibit halls and over 100 mind-stimulating exhibits is FREE
700 Exposition Park Dr
Los Angeles, CA 90037
www.californiasciencecenter.org
Natural History Museum
Explore the Dinosaur Hall, Nature Gardens, and dioramas of animals from around the world. Check out
special tours, exhibits, and talks available throughout the day
900 Exposition Blvd
Los Angeles, CA 90007
http://www.nhm.org/site/
Wildlife Learning Center
Explore 50 different species of animals from around the world. Enjoy talks from biologists about the
incredible animals.
16027 Yarnell Street
Sylmar, CA 91342
http://www.wildlifelearningcenter.com/
Los Angeles Zoo
The Zoo and Botanical Gardens are situated on over 100 acres near Griffith Park and the San Gabriel
Mountains.
5333 Zoo Drive
Los Angeles, CA, 90027.
http://lazoo.org/
**Visit the Los Angeles Zoo and the Aquarium of the Pacific in Long Beach for one a discounted
combination price available online**
Aquarium of the Pacific
5 acres of Pacific Galleries with more than 11,000 marine animals. Be sure to check out special
toddler and preschool program options as well.
100 Aquarium Way,
Long Beach, CA 90802
http://www.aquariumofpacific.org/
| Universally Accessible Playgrounds in Los Angeles | |
| * Select facility name for site specific information | |
| Name | Address |
| AIDAN'S PLACE - WESTWOOD RC | 1350 S. Sepulveda, Los Angeles, CA 90024 |
| ARROYO SECO PARK (AKA HERMON PARK) | 5566 Via Marisol, Los Angeles, CA 90042 |
| BARRY A. SANDERS SPORTSFIELD (Beilenson Park) | 6200 Balboa Blvd., Van Nuys, CA 91406 |
| DE GARMO PARK | 10145 Arminta St., Sun Valley, CA 91352 |
| DEARBORN PARK | 17141 Nordhoff St., Northridge, CA 91325 |
| GLEN ALLA PARK | 4601 Alla Rd., Los Angeles, CA 90292 |
| HANSEN DAM RECREATION CENTER | 11770 Foothill Blvd., Lake View Terrace, CA 91342 |
| HAZARD RECREATION CENTER | 2230 Norfolk St., Los Angeles, CA 90033 |
| KEN MALLOY HARBOR REGIONAL PARK | 25820 S. Vermont Ave., Harbor City, CA 90710 |
| LAKE BALBOA/ANTHONY C. BEILENSON PARK | 6300 Balboa Blvd., Van Nuys, CA 91316 |
| LAKE STREET PARK | 211 N. Lake St., Los Angeles , CA 90026 |
| LINCOLN PARK | 3600 N. Mission Rd., Los Angeles, CA 90031 |
| MARTIN LUTHER KING JR. THERAPEUTIC RC | 3916 S. Western Ave., Los Angeles, CA 90062 |
| ORTHOPAEDIC HOSPITAL | 2400 Flower St., Los Angeles, CA 90007 |
| POTTER (BENNY H.) WEST ADAMS AVENUES MEMORIAL PARK | 2413 S. 2nd Ave., Los Angeles, CA 90018 |
| RENÉE'S PLACE AT PAN PACIFIC PARK | 7600 Beverly Blvd., Los Angeles, CA 90036 |
| RIO DE LOS ANGELES STATE PARK | 1900 N. San Fernando Rd., Los Angeles, CA 90065 |
| RITCHIE VALENS PARK | 10736 Laurel Canyon Blvd., Pacoima, CA 91331 |
| ROSECRANS RECREATION CENTER/CVS PLAYGROUND | 840 West 149th St., Gardena, CA 90247 |
| SHADOW RANCH PARK | 22633 Vanowen St., West Hills, CA 91307 |
| SHANE'S INSPIRATION – GRIFFITH PARK | 4800 Crystal Springs Dr., Los Angeles, CA 90027 |
| SLAVIN (JAMIE BETH) PARK | 7965 Whitsett Ave., No. Hollywood, CA 91605 |
| SOUTH PARK PLAYGROUND | 351 E. 51st St., Los Angeles, CA 90011 |
| STONER RECREATION CENTER PLAYGROUND | 1835 Stoner Ave., West Los Angeles, CA 90025 |
| SYCAMORE GROVE PARK | 4702 N. Figueroa St., Los Angeles, CA 90042 |
| TOBIAS AVENUE PARK | 9122 Tobias Avenue, Panorama City, CA 91402 |
| VALLEY GLEN COMMUNITY PARK (FORMERLY ERWIN PARK) | 6150 Atoll Ave., Van Nuys, CA 91436 |
| VAN NUYS – SHERMAN OAKS PARK | 14201 Huston St., Sherman Oaks, CA 91423 |
| WESTCHESTER RECREATION CENTER | 7000 W. Manchester Ave., Los Angeles, CA 90045 |
| WESTSIDE NEIGHBORHOOD PARK | 3085 Clyde Ave, Los Angeles, CA 90016 |
| WILSHIRE CREST ELEMENTARY SCHOOL | 5241 W. Olympic Blvd., Los Angeles, CA 90036 |
Courtesy of LA City department of Parks and Recreation
http://www.laparks.org/dos/playground/accessibleplay.htm
Kidseum, part of the Bowers Museum, Santa Ana
The museum provides multi-faceted art and cultural experiences for young children, their families
and the community by offering hands on exploration and creativity.
Free admission on the first Sunday of each month.
1802 N. Main Street
Santa Ana, CA 92706
http://www.bowers.org/index.php/visit/kidseum/about-kidseum
Discovery Science Center, Santa Ana
The museum offers a variety of fun exhibits as well as rotating exhibitions like Lego Castles, Bob
the Builder, and Da Vinci. Bank of America cardholders receive 1 free general admission on the first
Sunday of each month; Santa Ana residents receive up to 4 free admissions per address with valid ID
(proof of residency) on the first Tuesday of every month
2500 N. Main Street
Santa Ana, CA 92705
http://www.discoverycube.org/
Pretend City, Irvine
A hands-on experience for 0-8year olds. This mini-city just for the small set (best for 2-4 year
olds) encourages kids to play grownup and be dentists, firefighters, farmers, construction workers,
rockstars, grocery clerks, artists and more. 2-for-1 admission (with online coupon) on Way to Play
Days: The second Friday of every month! http://pretendcity.org/visit/monthly-programs/way-to-play-days/
29 Hubble
Irvine, CA 92618
http://pretendcity.org/
Children's Museum of La Habra
Located in a historic 1923 Train Depot, this museum features seven galleries and fourteen different
hands-on exhibits designed to engage young children
On the first Sunday of every month admission is free from 1pm – 5pm
301 S. Euclid St.
La Habra CA 90631
Key points to remember:
Please always speak with your neuromuscular team before engaging in any new activities.
Stretching is important for maintaining movement needed to participate in daily activities
Listen to fatigue. Avoid walking long distances or playing to the point of exhaustion. Take breaks as needed.
Not all adaptations will work for every child but here are some suggestions to help keep you engaged with peers and activities you enjoy!
Potentially good activities to participate in:
When engaging in stationary activities, it is best to sit in a chair at a table in order to minimize standing and having to get up from the floor. Sitting on an elevated surface (higher chair, chair with a foam pad or pillow) will help getting up not be as difficult of a task.
Adapting sports to conserve energy
Use lighter equipment if possible such as plastic bats or whiffle balls. Consider using a Frisbee
instead of ball for golf, soccer, or baseball.
Soccer
Baseball
Basketball
Bowling
Wheelchair sports are fun ways to participate in sports while conserving energy
Beach wheelchairs are available free of charge at several Los Angeles County public beaches. They are
available first-come, first serve. More information about beach locations and policies can be found
at
http://file.lacounty.gov/dbh/docs/cms1_168368.pdf
Activities to avoid:
Strength building activities
Eccentric activities
(Eccentric activity is when your muscle is lengthening while the muscle is still producing force,
slowing down the motion as with squatting and descending stairs).
In general you want to:
Responses to Questions from DuchenneConnect Presentation by Dr. Nelson: There were a number of additional questions for which there was not sufficient time after the presentations. These questions and answers are posted here.
There is substantial information written for families and a highly informative yearly conference each summer organized by Parent Project Muscular Dystrophy that provides opportunities to connect with other DMD families. PPMD also organizes lobbying efforts on behalf of increased federal funding for DMD research. The website for PPMD is at http://www.parentprojectmd.org
Annual Conference Organized by Parent Project Muscular Dystrophy
An annual conference directed at providing educational materials and updates on scientific and clinical
progress in DMD is organized by Parent Project Muscular Dystrophy. We recommend attending the annual
conference if you can, it is a great way to meet other parents, as well as clinical and research
leaders in the field. For more info please click
here.
A program of PPMD which serves as a central hub linking the resources and needs of the Duchenne/Becker
muscular dystrophy community: young men with Duchenne; their families and caregivers; and the provider
community: clinical care providers, policymakers, industry professionals and the medical research fields. We
offer registered members resources to: assist with early, appropriate and least invasive diagnosis; explore
the benefits and limitations of genetic testing; offer access to resources and services, including care and
treatment; and assist in understanding and development of new treatment trials. http://www.duchenneconnect.org.
A local non profit organization founded by Debra and Paul Miller, that supports basic and clinical research
throughout the world leading to treatments for DMD. Their website offers opportunities for fundraising and
updates information on new trials in DMD and research, and has links to useful services http://www.cureduchenne.org.
A national organization that supports a network of clinics and research for many neuromuscular diseases
including DMD. They also have a variety of resources to help families access equipment and attend special summer
camps http://www.mdausa.org
Our mission is to build a supportive community to help us end Duchenne Muscular Dystrophy by raising money for ground-breaking research, spreading awareness, and providing aid to children and families with Duchenne.
Everyone has been through difficult situations that may have seemed impossible to overcome. In these difficult times, it is crucial that you stay strong and stay motivated, you will be surprised to find that nothing can stand in your way. -Cooper J.
Little Hercules Foundation and Team Joseph have a strong history of working together to fund promising Duchenne research. We decided that while we believe in the promise of future treatments, we also see the need to help families right now. In this moment. We identified two priorities—to offer families financial assistance with expenses related to the care of a child or young adult with Duchenne, and to provide help and expertise to families who need access to recommended treatments and equipment, clinical care, and social services.
