As many of you know, "Ignorance is a Curable Disease" is the FiveHumans tagline. This is the foundation of what FiveHumans is all about; curing the ignorance surrounding causes that affect humans everywhere. We try everyday to cure our own ignorance about the many things humans suffer with and every time we feel proud that we have gained a little more knowledge and become a little less ignorant, something happens that lets us know we still have a lifetime of learning to do.

Recently a friend of FiveHumans, Brandy, wrote me about a cause near and dear to her, Duchenne muscular dystrophy. I was proud that, unlike Noonan Syndrome, I had actually heard of muscular dystrophy, even though I had never heard the term Duchenne associated with MD. Of course, like many people, I immediately thought of the Jerry Lewis telethon and the Jerry's Kids donation containers at the grocery store, but when I actually started reading about it, I realized that even a disorder like this that had received a ton of exposure over the years has not sunk in to the consciousness of humans enough for us to know much about it or worse yet, to have found a cure.

Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births . It is a degenerative disorder that affects "primarily" boys -- I haven't yet found in my short time researching, a case of a girl with Duchenne, but from what I read it is theoretically possible because it is caused by a defect in the dystrophin gene that is only carried on the X-chromosome. Because boys only have one X-chromosome, they don't have a chance of a second X-chromosome making up for the damaged one. My ignorant assumption is that in a rare case, a girl could have the damage in two X-chromosomes, but again, I haven't found much about this either way -- and they usually pass away in their 20's or 30's.

I'll be as quick as I can here, but what hit me the hardest was the stages of Duchenne... Boys who are seemingly normal babies are diagnosed typically between 2 and 7 when they start to miss some developmental milestones because their bodies produce no dystrophin which is a protien required to maintain the structure of muscle. Eventually, without dystrophin, muscles are unable to operate properly, suffer progressive damage, and eventually die. Boys with Duchenne eventually die from complications related to this, i.e. heart or respiratory failure. It somewhat reminds me of Lou Gehrig's disease, which is something I've been personally a little afraid of, but instead of thinking of myself dying of that someday, when I was reading about Duchenne, I immediately thought of my 1yr old son and thought, what if I had to watch him progressively lose mobility and bodily function and eventually die. That truly shook me...

That's why I had to write something and tell anyone reading this to do what I am going to do and think twice when you see a telethon or a donation bucket; try to think what you can do to help find a cure for Duchenne muscular dystrophy. Help open people's eyes, ears and most importantly, their hearts by spreading knowledge and staying aware yourself.

Brandy, I wish you and Finn the best. You are in my thoughts and I applaud you for not just sitting back and feeling sorry (which would be a completely normal response), but for being active and trying to do what you can to help Finn and the many other boys with Duchenne. You are an inspiration.

For more information on Duchenne muscular dystrophy, follow this link: http://www.parentprojectmd.org/site/PageServer?pagename=understanding_about