The Muscular Dystrophy Association (MDA) raises thousands of dollars a year fund research into the 40 strains of the disease, including amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease), and Duchenne (DMD), which I have. At most of their fundraising events, there is no overhead, so unlike all the pink merchandise for breast cancer, the money raised actually goes to research as advertised. Some take issue with the ways MDA promotes their cause, but I do give them credit for doing exactly what they intend to with their funding, be it research or one of the many summer camps they sponsor nationwide.

MDA summer camp left me with so many good memories

The research is a slow, expensive process, but there have been some promising breakthroughs in recent years that could lead to effective treatments for people with DMD or other kinds of muscular dystrophy. Some of these treatments have even made it to the early stages of clinical testing, including gene therapies and exon skipping. I don't feel brave enough or self-sacrificing enough to undergo any experimental treatments, but I hope younger generations benefit from whatever drugs or therapies come from all this research. I say future generations because it might be too late for those things to help people who have already lived most of our lives with some kind of muscular dystrophy. But, there are better things we can do than feel bitter about medical realities.

When I was diagnosed with DMD at about age four, those of us with the disease weren't expected to live long past our teen years, a possibility my family prepared for, but now I'm 28 and I'm not the first to defy those low expectations. In fact, over just the last 20 years, life expectancy has risen to the 40-50+ age range for us. Consider that fact alone a small victory for modern medicine. Those years offer just enough time to finish college, start a career, start a family, and have all sorts of life experiences. As for me personally, I sometimes think about all the things I haven't done or can't do and forget some of the best experiences I've had in life so far. I'm getting my bachelors, I waterski, I've parasailed, rafted(kind of), traveled all over the country, and I'm not done yet. Sometimes I wish MDA could have offered more to make the transition to adulthood more manageable, but I've gotten by fairly well so far. If some magic pill, or even more fantastical, a cure for DMD came along, I might just jump at the chance, but I won't hold my breath. I'm too busy doing the best I can with the hand I was dealt.

How I'll be spending my summer outside of class