Resources

This is your community resource page. If you have additional resources to add to this list, please contact us at info@curecmd.org. If you have home improvement plans or solutions, or if you would like to feature your therapist for our quarterly therapy spotlight, please contact us as well.

All information listed on this page has been written by individuals with CMD and parents of children with CMD. You agree to release all members from any legal liability for any correspondence with this group or advice given. A doctor’s consultation should always be obtained before considering any advice from this group.


Standards of Care for Congenital Muscle Disease

Care Guidelines for Congenital Muscular Dystrophy and Congenital Myopathy
Management of CMD: A Family Guide – in Multiple Languages


Research & Education Video Series

General Information for all Congenital Muscle Disease Subtypes
Disorder Specific videos for CMD and CM


Family Conference Presentations

2011 Conference Presentations (please allow a few moments for the page to load)
2010 Conference Presentations (please allow a few moments for the page to load)


Online Support Groups

Support Groups and other Online Resources


Medical Aspects of Disease

Genetics/diagnosis
Breathing issues
Heart issues
Feeding issues
Sedation/General Anesthesia
Malignant Hyperthermia Association of the United States


Diagnosis & Genetic Testing

Primary Care Physician’s Guide to Early Diagnosis of Neuromuscular Disease
The Importance of Genetic Testing
Genetic Testing for Congenital Myopathies/Muscular Dystrophies through the University of Chicago


Medication & Supplements

The Use of Creatine in Neuromuscular Disease


Exercise & Therapy

Exercising with a Muscle Disease
Featured physical, occupational or speech therapist: April Milan
Stretch Out! Stretching Video Series sponsored by Children’s National Medical Center


Recreational Activities

Miracle League


School

1. IEP
2. Augmentive communication devices


Equipment

1. Adaptive Strollers
2. Manual vs Power Wheelchairs
3. Adapted Vehicles & Driving


Advocacy

Advocacy 101
MD Care Act
American Disability Act


Adaptive Resources

Abilities Expo
www.abilitiesexpo.com
A show for independent and assisted living products and services.

Equipment Catalogues
These resources include many items such as adaptive swings, feeding equipment, standers, gait trainers, and other special needs equipment.

Achievements Products for Children
www.specialkidszone.com
1-800-373-4699

Community Playthings
www.communityplaythings.com
1-800-777-4244

Flag House
www.flaghouse.com
1-800-793-7900

Sammons Preston
www.sammonspreston.com
1-800-323-5547

TherAdapt
www.theradapt.com
1-800-261-4919

Adapted bike carriers
www.cycletote.com
1-800-747-2407
Bicycle carriers for special needs, accommodating up to 175 lbs.

Adaptive Mall
http://www.adaptivemall.com/
Special needs strollers, car seats, standers, and other adaptive equipment

Abilitations
http://store.schoolspecialty.com
Tools and equipment for adapted literacy, handwriting, balance, mobility, positioning, furniture, play, communication, sensory solutions, fine motor, oral motor and body works.

Volunteers

If you are interested in volunteering, please contact us at info@curecmd.org


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  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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