Extraneous and repetitive e-mails annoy everyone, I know. But there's one e-mail that keeps popping into my box every few minutes, and I love it! "You've Got Cash" is the subject, and it is a notification from Paypal that a customer has bought a Darius Goes West dvd (or two or twenty).
While I sit at my desk working on upcoming events, preparing the 2008 Charley's Fund budget, and tracking down the painter who is supposed to be finishing our new downstairs bathroom (just a sampling of my daily activities), every few minutes I hear the "blip-bleep" that indicates a new DGW order. I recognize lots of the names as friends and supporters who have been helping Charley’s Fund since we started this fight against DMD. But I am really struck by the number of people I do not know. Darius and his friends have catapulted our cause into the public eye. Customers from Iowa, Hawaii, Canada, even Australia are purchasing the film.
Although the documentary is a wrap, the 12 crew members are continuing their involvement in our fight for a cure. Know About It!, the program that brings the film and related lesson plans to middle and high schools, is up and running. If you are a student, teacher, or parent, check out www.DGWKnowAboutIt.com to learn more about how to get this program into your school. Crew members are speaking at conferences around the country. Plans are in the works for Darius to record a hip-hop album with some favorite rappers. I literally could not dream of a better gift for Charley’s Fund -- 12 young, handsome, hip guys volunteering to travel from state to state, rallying people all over the country to help raise money for our fight against Duchenne muscular dystrophy. Thank you, DGW crew, for your tireless efforts. We are so proud that you will be honored on May 15 at the Matt’s Promise gala at New York City’s Cipriani!!
Ranging in age from 18-29 years old, the Darius crew seems very young to be so determined to help. But we have even younger supporters who are making big sacrifices to push us closer to a treatment for DMD. Charley’s first cousin Solomon Seckler, age 13, recently generated $30,000 in donations to Charley’s Fund by forfeiting his bar-mitzvah gifts. Even when pressed by people who really wanted to buy him something (like his grandmother and Benjy and me), the only request Solomon made was “a check to Charley’s Fund.” I like to think of myself as having been a good kid, but I still can’t imagine saying no thank you to gifts from hundreds of people in honor of a major milestone that I worked really hard to achieve. Solomon even handed over cash that people gave him on his big day! Thanks to Solomon, whose bar-mtizvah theme was Extreme Sports, we now have the “Extreme Mitzvah” version of the Charley’s Fund t-shirt. If you are 13 years old, perform a major mitzvah for Charley’s Fund and we’ll send you this ultra-cool jersey-style t-shirt designed by Solomon.
The $30,000 Solomon raised will be used to finance research being conducted by CombinatoRx, the biotech company in Cambridge, Massachusetts that is working on a DMD therapy. Next week I am headed to the lab in Cambridge to tour the facility and get an update on the cutting-edge research that this company is doing to develop a treatment for Charley and thousands of other DMD boys. Also in January, we make our second payment to AVI Biopharma, the company in Portland, OR that is preparing for a human clinical trial of its exon-skipping therapy. If this therapy works the way we hope it will, it should transform DMD into a much milder form of the disease called Becker muscular dystrophy. People with Becker MD can have mild symptoms, and some are even asymptomatic! We are very pleased that so far the scientists at AVI Biopharma are sticking to the timeline they outlined in their agreement with Charley’s Fund. Speaking of exon-skipping, another company we have funded called Prosensa was recently covered in the New York Times and other major newspapers for moving ahead with their clinical trial in the Netherlands. Prosensa’s scientists have shown that they can produce dystrophin in a single muscle in a DMD boy. They are getting ready to test delivery of the therapy to all the body’s muscles via under-the-skin injection. Six boys will participate in the trial. This is truly historic, and we are waiting with bated breath for the results.
I hope you now know that when I don’t write in the blog for months at a time, that doesn’t mean nothing is happening. To the contrary, so much is happening that I don’t make the time to update you. My new year’s resolution is to update this blog at least every month (also to get in shape but I’m less optimistic about that one). Please hold me to this by e-mailing me with lots of questions about the research, our fundraising efforts, and Charley. By the way, for those of you following the “hair saga,” he is now sporting a way-out 1970s afro. Depending on how you look at it, this could qualify as ending on a positive note. For me, the positive note is that tomorrow he has an appointment with the barber!