Charley with his sister Maisy in Florida last week
Clearly I haven’t mastered the art of blogging. This week it occurred to me that I hadn’t posted an entry in a while, maybe even a couple of months. So I logged in to update my readers. To my shock and horror, the most recent entry is dated January 2011! So it has been a couple of months, PLUS A WHOLE YEAR!! The reason for this sorry delay is not because I’m too busy. With fundraising for Charley’s Fund and overseeing the foundation’s operations; taking care of three kids (plus husband); and running my new shoe company, I am definitely not swimming in free time. But I do have moments here and there, and blogging only takes a few of those.
I think the problem lies in my learning curve with the genre. I still struggle to achieve that new-age balance required for blogging – the balance between writing and talking that seems to come so naturally to anyone under the age of 30. The lessons I learned in the required expository writing class at college (“freshman expos”) are still deeply ingrained. Labor over every word. Use a thesaurus. Start each paragraph with a topic sentence, and make sure the rest of the sentences in the paragraph fall neatly under that umbrella. Conclude with a summary of your main points, plus a dash of something new and thought-provoking to make sure the piece isn’t boring.
I’m at peace with the idea that with blog entries, all that goes out the window. But I fear that in the absence of that old reliable structure, I’ll ramble on like I’m talking to my sister on the phone and bore you with every last detail of my day including what happened with Sam at the orthodontist and my thoughts on why Maisy doesn’t like turkey anymore.
So I procrastinate. And I avoid. And now it’s been 14 months since I last updated you. Today I realized that even worse than the risk of boring you with excessive unimportant details is the risk that you will attribute my infrequent postings to lack of important advancements to report, which could not be further from the actual case.
It’s useless to try to get you up to speed on the past 14 months, so I hope the Charley’s Fund website and our two mailings last year kept you more or less up to date. Halo Therapeutics is advancing its lead compound (HT-100) into clinical trials. Prosensa’s lead compound has advanced to phase 3 clinical trials, and we are once again collaborating with the Dutch biotech to develop more exon skipping drugs for Duchenne. AVI Biopharma is expected to release crucial clinical trial data next month. Tivorsan Pharmaceuticals has licensed the right to develop biglycan as a therapy for DMD. They are now raising money and putting a development plan in place. Two clinical trials are well under way to test repurposed FDA-approved drugs, Revatio and Increlex. So things are hopping.
To support this miraculous progress at the fastest possible rate, we launched Muscle Up!, a campaign to raise $5 million over two years. We are gearing up now to form a committee, secure lead donors, and pound the pavement to make sure reach we our goal. To give us a leg up, Maclaren released the “I Believe…” stroller, which is making its way into nurseries of some pretty big stylemakers. So far Blue Ivy has one, and also rumored Real Housewife of New York Aviva Drescher. So if you want to be hip AND support Charley’s Fund, get your stroller now at maclarenbaby.com!
That’s it – I’m stopping now because I don’t want to “laundry list” you. And I know myself too well to end with a promise to blog at least once a week. Instead I implore you to think of Charley’s Fund the next time you need a gift – the next time you have a birthday – the next time you find yourself with some spare time – if you have an ipad you can donate. All hands on deck now to raise $5 million!!