This may not sound right but I have to say it anyway — thank god the kids are back in school!!!!! Summer was full and fun but those last two weeks were trying, I must admit. Now that Maisy has started to pipe up and add her two cents into the sibling dynamic, all three of the kids can really get on each other’s nerves!
I shouldn’t let that overshadow the fantastic eight weeks of summer. Charley spent every day at Eisner Day Camp, where he is pleased to be the oldest and — in his opinion — coolest kid in the camp. Charley’s older brother Sam got to spread his wings a little at sleepaway camp in Northern Berkshire county. Although it’s sad to know that Charley won’t join him there, we were relieved to give Sam his much-needed space.
In mid-August, we were lucky to have the best weather of the entire summer for our one-week vacation at a friend’s house in the Hamptons. All we did was lounge by the pool all day long. Ironically Charley was the antsy one, constantly bugging us to play tennis, “volley-balloon,” and card games.
On the foundation front, we spent much of the summer working with Marie Payton, our Clinical Consultant, to map out a plan for implementing pilot trials for FDA-approved drugs. We are excited to have a real roadmap for moving forward. Funds permitting, we aim to have at least one trial start this year and one in the first quarter of 2010. Other collaborations are moving forward on track, including the work at AVI Biopharma and Dr. Jim Ervasti’s research at the University of Minnesota. Because these and other novel therapies are so close, it is essential that we identify FDA-approved drugs that can help DMD kids stay strong until new breakthrough treatments are available.
One strategy for coming up with the funding for these exciting projects was to reach out to donors who have not been active for over a year. So far the response has been encouraging. People who helped us get off to a strong start are now coming through once again to help us push the ball even farther down the field. Thank you to everyone who answered our plea for help this summer!
Please get involved this fall —
- come to our Spa Day on Sept 25th (bring a friend on the half-price companion ticket!!)
- watch Benjy and his old buddies play football in the Harrison-Rye reunion game
- do your holiday shopping at Live and Let’s Give the weekend of Nov 6-8 in Pittsfield
- make a donation in someone’s honor…we’ll send a cute card!
This fall marks many new beginnings: the Jewish new year, Charley’s birthday, we move into our new house, and the initiation of Pilot Trials Now. I have a good feeling about all this…