When you hear the words Breast Cancer, or Aids, or Heart Attack mostly you can associate quickly the severity, treatment plan and life expectancy of the affect person. Though it is always horrible to hear of these words, usually there is a quick association and clear understanding.

 

What we have found as parents of a child with Muscular Dystrophy (MD), all that is really associated with MD is that he is “Jerry’s Kids”. It has amazed us through this entire diagnosis experience, not only our own ignorance to MD, but the general mass’ ignorance to Muscular Dystrophy despite the fact that the MDA Jerry Lewis Telethon has been going on for 20 plus years.

Did you know, there are 40 types of Neuromuscular Diseases including nine types of Muscular Dystrophy?   We did not.

That is why we have set up John Owen’s Adventure, Inc. Not just to raise awareness for DMD, but to fund awareness for chronic childhood illnesses. We want to develop funds for finding a cure, sustaining the quality of life for these affected children and educating the general public about such illnesses.

 

Though every disease is important, just as every little life is precious. Most of us in life at some time have a cross to carry, it just so happens that this is ours right now, so this is our focus. 

As we said – every disease is important. But when it is your child, your child that will suffer beyond what you ever imagined your child having to suffer ~you get a bit needy for a cure. The research thus far has been amazing! When you look at what the MDA and what the telethon brings in annually, at first blush you think WOW, $63 million, hey that’s not bad.

 

But then compare that to $4.6 billion dollars raised annually for cancer, $1 billion for Alzheimer’s, jiminy – I think the American Idol show in 2008, raised more than the telethon and that was one night! According to one of our expert doctors – $63 million is a drop in the bucket. So when it is your son, you get a bit discouraged at that drop in the bucket.

Recently, we read Augie’s Quest by Augie Nieto and T.R. Pearson ~ buy it ~ great book! It really brings you into the world of the MDA and the need for real dollars in a cure! It is just that because so many of the Muscular Dystrophy diseases are so “rare” {when it is your kid ~ it does not feel rare} the pharmaceutical companies do not want to invest in the cure since the audience for profit is a lot lower than the mainstream diseases. When it is your kid in the audience, your voice gets to be a bit louder.

 

We have committed to raising awareness for Duchenne’s Muscular Dystrophy and Juvenile Diabetes, because these two chronic illnesses have hit our family.

 

Please join us on this journey, take a look around our website and learn.  Thank you