Woman Warrior: When the going got tough, our Lead Writer got going.
We are so close, we’re family. We’ve worked together for decades. And I still remember the day our writer Jennifer told me something was worrisome in her young son’s test results.
Turns out, her charming, delicious little boy with hair like a troll doll to match his mischievous streak, had Duchenne Muscular Dystrophy. Like everything else in her life, Jennnifer attacked it head-on. Today, she has reason to be hopeful, and she’s controlling her family’s destiny by starting her organization, curecharlie.org.
As you can imagine, the woman is BUSY, but I snuck in 3 questions I’ve always wanted to know.
HCC: People always say, “every little bit counts.” Does it really? What’s the best way to be supportive?
Jennifer: It truly does. Think about it this way--science had the mRNA technology for the COVID vaccine years before COVID created a tipping point that expedited its application. It is very much the same for Duchenne and other rare diseases. The pace of change in the science, including gene therapies, is mind-boggling. I think of it as a series of different machines humming out there--at some point, there will be a tipping point, and everything will come together. The more funding scientists have, the sooner that will happen. And like a coin jar, small donations add up far quicker than you think!
HCC: How on earth do you juggle work as a creative leader of your own business with having your own charity?
Jennnifer: Some days, it feels more like whack-a-mole than juggling. My time has become even more calibrated than ever and I don’t have a lot of (read: any) room for extraneous nonsense. I will say that each benefits the other in surprising ways. My work, which often covers medicine, and always involves creative problem-solving, informs my efforts for Charlie. And my efforts for Charlie, I think, are enhancing my capacity for humanity and prioritizing what truly matters!
HCC: How do you focus when you’re in the thick of an emotional day? Is there anything employers should think about when their employees have kids with life-impacting diseases?
Jennifer: I always go back to the saying, “Be kind, because almost everyone has some sort of battle they are fighting.” You just never know what is going on behind a brave face. Kindness and empathy are always, always of the essence. Unless you’re a trauma surgeon, some things can wait.