This is your community resource page. If you have additional resources to add to this list, please contact us at 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

Online Support Groups

Support Groups and other Online Resources

Medical Aspects of Disease

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


1. IEP
2. Augmentive communication devices


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


Advocacy 101
MD Care Act
American Disability Act

Adaptive Resources

Abilities Expo
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

Rifton Equipment

Flag House

Sammons Preston


Adapted bike carriers
Bicycle carriers for special needs, accommodating up to 175 lbs.

Adaptive Mall
Special needs strollers, car seats, standers, and other adaptive equipment

Tools and equipment for adapted literacy, handwriting, balance, mobility, positioning, furniture, play, communication, sensory solutions, fine motor, oral motor and body works.


If you are interested in volunteering, please contact us at

  • 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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