When I look back to review previous blogs, I realize how huge the chasm is between what goes on in our lives and what gets conveyed to our friends and supporters. I’m averaging a blog entry every three months, which would seem to indicate that there isn’t much news to report. The truth is that our days are so jam-packed that exhaustion and brain-overload is what prevents me from writing more frequent updates. I consider it a positive sign that we are so busy. We are constantly in touch with scientists who are moving their research forward. We are working with the Darius Goes West crew to raise funds for our fight all over the country. We are collaborating with other foundations to leverage our support to have the biggest possible impact. Over the past four years, the work we do has dramatically intensified. It’s a constant battle to do as much as possible without getting swallowed up whole by this intense fight.
I am very excited to have help in the form of Cheryl Rosen, our new Director of Development and Operations. Cheryl will oversee our fundraising efforts and ensure that our day-to-day operations run more smoothly. With the addition of Cheryl to our team, we are increasing our capacity to support everyone out there who wants to organize a fundraiser or get involved in some way. In this difficult economic environment, so many of our supporters have had to cut back on expenses, including charitable giving. To compensate for the fact that donations are smaller, we need to reach out to more people. That kind of effort is very difficult — if not impossible — with no staff. Cheryl has raised money as a volunteer for various New York- based organizations, including Horace Mann School and the Ittelson Center. Her professional background as a consultant and analyst will inform her efforts as she develops a strategic fundraising plan for Charley’s Fund. Please feel free to contact Cheryl at carosen@charleysfund.org to say hello. She is enjoying getting to know our supporters!
We’re looking forward to a family vacation in Florida next week. During this icy and snowy winter, we’ve been living in a rental house perched at the top of a precarious driveway. Getting down the driveway to meet the bus in the mornings has been an adventure in itself! It’s been a long winter so far, made longer by the fact that Charley is not skiing this year. We are trying to preserve as much muscle mass as possible, and excessive exercise can work against this. While his older brother Sam takes snowboarding lessons, Charley’s been great about finding alternate activities. But it breaks our hearts to hold him back from a family sport we all love.
We can’t wait for some sunshine over President’s Week. We’ll hit the beach and the pool and the burgers. Hopefully I’ll even be refreshed enough to write a post-vacation blog, including some photos.