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:

Los Angeles area:

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

Orange County area

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:

  • Swimming
  • Biking
  • Fishing
  • Horseback riding
  • Music
  • Arts and crafts
  • Board games
  • Ball play: catching and throwing (a beach ball or balloon will be lighter to manage)

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

  • Be the goalie to minimize running needed
  • Minimize the field size to limit the amount of running

Baseball

  • Hit but have a pinch runner for you
  • Use whiffle ball which is lighter, slower, and easier to spot
  • Try using a tee for batting. Use a plastic bat which would be lighter.

Basketball

  • Throw but minimize jumping and running
  • Lower the basket height to minimize strength needed to shoot the ball

Bowling

  • Use a ramp

Wheelchair sports are fun ways to participate in sports while conserving energy

  • Soccer – attach a cage or open box to capture and direct the ball
  • Hockey – attach a stick to wheelchair

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

  • Do not use weights with exercises

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:

  • minimize stairs especially going down. Take an elevator or scoot down on buttocks when going down stairs
  • minimize squatting type activities
  • minimize going down hills
  • minimize jumping
  • minimize running
  • avoid trampoline
  • avoid hopscotch


PPMD Webinar

Duchenne Connect Study: Identification of Effective Therapies
and Observation of Disease Severity

Stanley F. Nelson, MD
Co-Director, Center for Duchenne Muscular Dystrophy


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.

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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

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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