Moving Faster
Somewhat ironically, I am spending this summer trying as hard as I can to blend in with the crowd. After years of aiming to distinguish myself, I am now struggling to be the regular mom of a typical family. As long as we can keep up with everyone else, Charley must be holding on. At camp pickup each afternoon, I scrutinize the other moms’ facial expressions to see if they notice anything different about Charley. I pray that when I pick him up at a playdate the host mom will say, “He wasn’t tired at all; he seemed great; it’s hard to believe there’s anything wrong.� I live for these comments. They provide affirmation that we can make it through at least one more summer as just another family with average kids.
We are learning to adapt so we can extend Charley’s “blend in� time. I provide a piggyback ride to the car after camp when he is too tired for the uphill walk. For our weekend activity, we choose fishing or tetherball instead of hiking or soccer. Although Benjy and I both spent our best summers at sleepaway camp, and always thought our kids would do the same, we’ve started downplaying sleepover camp as something “everyone� does when they turn nine years old.
In the meantime, we are furiously racing to develop a treatment for DMD before this relatively mild part of the disease progression comes to an end. We all know that money is the main ingredient needed to make the research move faster; however, we have also learned that focus is a vital missing element. There are many great scientists out there working on treatments for DMD, but all of them are busy doing other projects at the same time. It takes time to get a phone call back, to negotiate a contract, or to get a progress report. When we added that to the fact that Benjy -- who interfaces with scientists on behalf of Charley’s Fund -- is also holding down a job as a radiologist, our progress just wasn’t fast enough.
On the first day of 2007, we ramped up our speed and efficiency with the hiring of Dr. George Vella, our new Director of Research and Strategic Development. Dr. Vella has a PhD in bio-organic chemistry and 20+ years of experience in the pharmaceutical and biotechnology industries. Thanks to the generosity of Charley’s Angels Tom and Angie Wicka, who are underwriting half of Dr. Vella’s salary, we were able to lure this terrific candidate from a senior executive position at a promising biotech company. Remarkably, Dr. Vella is the only PhD-level scientist in the world whose sole job is to expedite a cure for Duchenne Muscular Dystrophy.
Since Dr. Vella joined Charley’s Fund, we have initiated four new research projects. Five additional proposals are in the works. These programs represent a varied portfolio of therapeutic approaches to DMD. Some of our researchers are testing drugs that are already FDA-approved for different illnesses. Others are developing new technologies that represent a paradigm shift in the way many of the world’s most notorious diseases are treated. Thanks to Dr. Vella, new projects are initiated much more quickly than before. Our scientists are held accountable and kept on track. “Being busy� is never an excuse. As we have said all along, we will not allow lack of money or focus to stand in the way of a treatment for Charley and so many other boys like him.
If you’ve read my other blog entries, you are waiting for me to end on a positive note. So I’ll tell you some really, really good news. We have a new Charley’s Angel named Theo Gund.* She is the reason that Darius Goes West will be shown in schools across the country, motivating young people to get out there and make a difference. She is also the reason that our whole family is flying out to Sun Valley, Idaho, next month. We’ll attend two benefit screenings of Darius Goes West at the Opera House on August 18th and 19th, hosted by Theo. We’ll also enjoy a couple of days in the gorgeous Rockies. Another little boy with DMD named Cooper will be there. We are looking forward to introducing Charley to Cooper, so our little warrior can know that he is not fighting this beast alone. He is joined by a force of at least 50,000 kids around the globe -- and all of us who love these children and will do anything in our power to make sure they defeat the enemy. Thank you for joining forces with us to make sure DMD meets its end very soon.
*Donors become Charley’s Angels with a minimum gift of $50,000.