Goodbye Summer

This afternoon I pick up Charley and his brother Sammy at camp for the last day this summer. I hate this day because it is such an abrupt end to the easy days of summer filled with swimsuits, sandals, lazy mornings, and barbeques. For eight blissful weeks, the boys happily bolt out the door every morning and come home exhausted but thrilled but every afternoon. Today marks the day that weekly pool parties, trips to the candy canteen, and campfires are replaced by dark mornings, homework, and a very long school bus ride. Especially now, while Charley is still mobile and energetic, the summer is so effortless. And although navigating Camp Eisner’s large campus sometimes a challenge for Charley, the staff makes it doable with piggy backs and golf cart rides at the ready whenever he starts to lag. The weightless feeling of swimming in a refreshing pool is fading. Soon I will be trudging up a sledding hill with Charley in tow, weighted down by five extra pounds of snow gear.

Although the winter is sure to be long, the past two months were filled with enough spectacular memories to warm me on those upcoming frigid mornings. The first summer highlight was definitely the Camp Hillard World Cup Soccer Challenge. Yesterday I visited Hillard in Scarsdale New York, where I was presented with a check for Charley’s Fund in the amount of $39,700!! The Libman Family, Camp Hillard’s owners, put on a great fundraiser with terrific give-aways for the kids and awesome t-shirts. The Libmans also generously donated a free summer to raffle off, which certainly increased donations. We are very grateful to the Libmans and to the staff, campers, and families at their fabulous camp.

Other summer highlights:

Charley learned how to do a front flip off the diving board. It is truly miraculous to see him jumping and flipping. I savor every second of his mobility. I will be sure to take him to the indoor pool when the weather gets cold so he can keep swimming, which is the best possible exercise for kids with DMD.

Mel and Enid Zuckerman, owners of Canyon Ranch, became our very first Charley’s Angels with a donation of $100,000. We are blessed to have met this extremely generous and caring family. And the Zuckermans are not stopping there…they have sent a letter to friends and colleagues seeking support for Charley’s Fund. We are thrilled to have the Zuckermans as such a significant part of the Charley’s Fund family.

Charley’s Fund initiated the DMD e-Tank, a virtual think tank devoted to finding solutions to challenges facing DMD researchers. The e-Tank is made up of six impressive DMD and drug development experts. They will scour the DMD community seeking challenges, and then scout out solutions using the world wide web. We are very excited about this cutting edge approach to solving problems that are holding up the research.

I would be remiss if I made the summer seem too much like a delightful breeze. For after all, DMD is a persistent ache in our hearts. And many times it is a sharp, stabbing pain. On the way to camp last week, Charley announced, “I love soccer because I love running.

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