I haven’t reported yet about our first official Charley’s Fund event, which took place in Rumson, NJ on June 13. It was a strange and surreal day for us, our first foray into the public arena. Until that day, we had kept our cause in the family, so to speak. Although we reached pretty far and wide, everything we did was by word of mouth. We appealed for help to friends, relatives and business associates. We contacted college buddies we hadn’t spoken to in years, we dug up the names and addresses of coworkers from long-ago jobs, we sent e-mails to all the parents of our children’s classmates. Even when we received a donation or a web page “hit” from an unfamiliar name, we were sure the person found out about us from a person we know, or someone we knew at some point in our lives.
The New Jersey event marked a big change for us by opening ourselves and our cause to the public. For the first time since Charley’s diagnosis, Benjy and I were interviewed by several local newspapers. Charley’s photo appeared next to the articles. On the downside, this shift out of our private world made the whole scene so much more real. To be positive, the exposure helped get the word out about Duchenne to people we never would have reached otherwise. Just the other day I received a donation from a New Jersey woman who read about Charley’s Fund in her local newspaper.
The event itself was really unique. Charley’s uncle, who lives in Rumson, knows one of the coaches of the England World Cup Women’s Lacrosse Team. This summer, while the team was visiting the United States for a tournament, he convinced them to host a lacrosse skills clinic for girls in grades 3-8. More than 75 girls signed up to play with the English coaches. It was a fabulous — albeit stiflingly hot — day. The coaches were upbeat and fun, and the participants seemed to have a great time as well as learn something from the clinic. (There was even a bit of British trivia being thrown around!)
The day was filled with stories of people who went out of their way to help, such as…
1. the English coaches who threw their utmost energy and enthusiasm into the clinic
2. a casual acquaintance of Charley’s uncle who heard what we were doing and wrote a check for $1,000 on the spot
3. the manager of Athlete’s Alley who donated prizesr
4. the caterer who sent over huge platters of goodies to feed the hungry athletes
We are grateful to many other people who helped make this event happen. In particular:
1. Head Coach Lois Richardson and Goalkeeping Coach Annie Richards
2. John Hird, the Director of Recreation in Rumson
3. Audra Green from Pfizer, a corporate sponsor of the event
4. Meridien Health, who donated backpacks
5. Rob Lavin, who donated water bottles
6. Diane and Mickey Gooch and Judy Alvarez at The Two River Times
7. Suzette O’Brien of Gourmet Picnic in Fair Haven, NJ
8. Diana Milkowski, Nancy Bach, Ann Jordan, Peter Richardson, Kerry Chandler, and Emily and Robert Godlberg for pitching in to help out.
Most of all, we are grateful to Rocky, Betsy, Sofia, Hana, Stanley and Lucas for brainstorming and planning the event. It just goes to show that — with a little creativity — anyone can help raise money for our cause. The lacrosse clinic brought us $5,000 closer to our goal.
At the end of August, friends up here in the Berkshires are hosting a dinner party in their home for 50 friends. Benjy and I will give a presentation and then we will all relax, eat, and enjoy the night. In November, we are heading to San Francisco to do a similar evening for a whole new crowd. This is another great way to spread news of Charley’s Fund and Duchenne Muscular Dystrophy beyond our own circle of friends and family. If you are interested in hosting a cocktail party or a dinner, please let us know. We will be happy to oblige!!