Muscular Dystrophy is more common than you think.

And it looks just like the little boy you see smiling above.

education is key

A quarter of a million children and adults are suffering from muscular dystrophy. Even though you may think you've never met anyone with a muscle disease, chances are you have but you didn't know. We aim to educate more people about this group of disorders, in the hopes that understanding will lead to passion and the desire for the cure.


Here are some general facts of some types of dystrophies.  There are many, along with many variations.  For more information, please see the MDA's section on Learning About Muscle Diseases.


Muscular dystrophies

Dystrophies effect the muscles that help with movement, and often also cardiac muscle.

  • Daily activities such as walking, running, and sitting up, are often difficult or impossible to do without help
  • Some patients are wheelchair bound, some eventually progress to wheelchair use
  • Each patient in each different type is different - no two follow the same path
  • Muscle disease are genetic in nature, meaning they are either inherited or caused by a gene mutation


Duchenne (DMD)

DMD is the most deadly form of all the dystrophies.  It is a fast progressing, debilitating and fatal disease.

  • Affects boys, usually between ages 2 and 6
  • Most will need a wheelchair by age 10-12
  • Over time, the heart and lungs are compromised
  • Average life expectancy is in the 20s


Spinal muscular atrophy (SMA)

  • There are four types, and patients are classified by when symptoms appear
    • The earlier the onset, the lower the level of functioning
  • Symptoms cover a broad range
  • Muscles most commonly affected are close to the core, including the shoulders, hips, back and thighs
  • Walking is often difficult, necessitating wheelchair use


emery-dreifuss (EDMD)

This is the type that our Harry has, and it is one of the more rare forms.

  • Triad of symptoms that are most common: 
    • Arm, shoulder, and neck weakness
    • Joint tightening, or contractures
    • Cardiac arrhythmias
  • Onset usually by age 10, slowly progressing
  • Cardiac problems usually present by age 20 



Discovery through research it what fuels us. There are countless new research projects popping up that need funding, and it is our intention to help those which can provide us with treatments for our loved ones.