Charley’s Fund: A Mother’s Take On Muscular Dystrophy
Our vacation week in the Hamptons could not have been more glorious. For the first time in a very long time, the weather was our best friend...sunny, clear blue skies with not a hint of humidity. For some reason, beach memories are extremely powerful for me. For those of you who have seen the movie Darius Goes West, you know I get emotional when I reminisce about a trip to Florida several years ago, specifically when I describe Benjy tossing Charley and Sammy around in the ocean. I'm not sure what it is about the sea...maybe it's a reminder that whoever created DMD also has the power to create such astounding beauty. Or maybe it's my childhood memories of Atlantic beach, jumping the waves with sisters and friends until dusk, and the dread that Charley's wave-jumping time is limited. I think the sheer power and expanse of the ocean is humbling and awe-inspiring...makes me think about our place in the world, that we're all pretty small in the grand scheme of things. At the same time, watching the waves crash in reminds me that our ability to achieve is limitless. We've sailed across the ocean, explored the bottom of the ocean, even flown over the ocean...surely we can beat Duchenne Muscular Dystrophy.
After dropping the kids with their grandparents and the puppy with a friend, Benjy and I headed down to Philadelphia for the most comprehensive annual DMD conference in the world. We participated in two intense days of scientific presentations as well as "break-out sessions" covering day-to-day issues that DMD families have to face, such as physical therapy and social isolation.
I have been to this DMD conference four times. My first time, in 2005, I remember hearing anxious parents talk about how the scientists seem to say the same thing year after year. That scared me—talking with experienced DMD parents who felt like nothing was changing. Thank God I do not have that feeling now. This year's conference was markedly different from past meetings. For starters, there was a panel of speakers from the biotechnology industry discussing the different therapies they are developing. Two of the speakers discussed human clinical trials that are underway, and others presented their plans to begin trials in the near future. The excitement over PTC-124, the first DMD drug to enter human clinical trials, was palpable. The company that is developing this medicine just struck a licensing deal with Genzyme, a major biotechnology company in Cambridge, MA. Finally, the biotechnology industry is paying attention to DMD, and the money you have generously donated is being leveraged by big investments from well-known industry players.
In closing, I feel the urge to come full circle with the beach metaphor...something about how the waves have been building, and now they are starting to crash into shore. It's in my mind somewhere, but as I learn more about this new blogging genre, I realize that it's better to write more often and less perfectly than to wait three months to produce an elegant essay laced with well-crafted metaphors.
One thing I will continue to do, no matter what, is to end on a high note. So here it is: Charley is still wave-jumping. With a humongous smile on his face, he readied himself for the break, bending his knees in anticipation of the onslaught. Time and time again he cleared the incoming wave with a small but real two-footed jump. And when he got tired, he decided that it is just as fun to swim under the waves as it is to jump over them. It's amazing that he can still jump, and just as amazing that he can adapt to what life sends his way without a hint of frustration or anger.
With your continued support, we will keep him going until we reach our goal.#
For donations go to http://www.charleysfund.com/donate.php