We recently completed back-to-back fundraising events in New York City. Our first annual children’s concert, starring David Grover and the Big Bear Band, was held on May 21st. The Dalton School’s Martin Theater was packed with kids! David Grover gave a fabulous performance. By the end of the show, he had half the audience up on stage singing along. Charley, who was seated front and center, remained fast asleep the entire time. Luckily, he woke up just in time for the activity hour, which featured arts and crafts, cupcake decorating, guessing jars, and raffles.
As I have mentioned in a past blog entry, I have a bit of a hard time with fundraising events. Even as the mood is festive and uplifting, I can’t get my mind off why we are there. This time, however, I was totally overwhelmed by the swell of support. First of all, the turnout was amazing. We sold more than 440 tickets and received a surge of donations in honor of the event from people who could not come. Friends and relatives generously underwrote the expenses so all the money raised could be spent on medical research. Thanks to all these donors, the concert brought in an impressive $62,000.
To look around the room and see our siblings, parents, nieces and nephews lugging instruments into the theater, selling t-shirts and bracelets, manning the activity booths, and cleaning up the huge mess reminded us how lucky we are to have our extraordinary family. I have often asked myself why more parents of children with DMD are not active in raising money for research that could save our children’s lives. But an afternoon like we had on May 21st reminds me that Benjy and I have only been able to do so much in such a short period of time because of the people who surround us. Not many people out there have families and friend like ours, who selflessly and continually give their time and money to help us achieve our goal.
The second event was a cocktail party for Fieldston alumni on the rooftop of Capitol Records. Several months ago, I received a phone call from an old high school friend, Diane Mayer, who had read about Charley’s Fund in our high school newsletter. Diane and her sister Jenny planned a mini-reunion where classmates and other alumni could hear more about Charley’s Fund and how they could help. Diane and Jenny did everything, from securing a really hip location to soliciting in-kind donations of food, wine, and beer. They designed the invitation and sent it to classmates and other friends. All Benjy and I had to do was show up.
We spent the first part of the evening reminiscing. It was amazing to be surrounded by friends I haven’t seen in years who came to learn about Charley’s Fund. We shared the stage that night with Logan Smalley, the director of the independent film Darius Goes West. Logan is working furiously all summer long to complete the film, which he will submit to Sundance and other festivals this fall. The movie needs financial support, national media attention, and connections that could help it get accepted to the festivals. All profits from the movie will go to Charley’s Fund. If this documentary gets the attention it deserves, it could do wonders in terms of awareness and fundraising for DMD research.
The audience at the Fieldston cocktail party seemed inspired by the Darius Goes West promotional trailer and our appeal for help. A flurry of e-mails and phone calls has ensued. So far, the event has precipitated excellent filmmaking advice and financial support for the film, an offer of pro bono PR services for Charley’s Fund, connections to several fashion editors who may be able to promote the Believe bracelet, two cocktail parties to be held by Fieldston alums, and even a caseload of free nutritional supplements for Charley!! The neurons continue to fire, and connections are being made right and left. Thank you to Diane and Jenny (and Allison Gilbert, who also helped with the planning) for putting together this amazing evening.
You know I like to end on a positive note, Enjoy, and keep in touch!