The Boston Globe: Coverage of FDA Review - Sarepta Gene Therapy

It honestly never occurred to me that one of my children might one day grace the front page of The Boston Globe, my hometown paper of record.

(And as an aside, just for context, this newspaper has held extra meaning for me over the years. My beloved college journalism professor, Derrick Z. Jackson, was a longtime Globe columnist; as a senior I shadowed an alumna of the college who was a managing editor. One of my favorite bosses ever, and probably the best editor I’ve ever had, held several editorial roles in his long Globe career. I once placed a client on the front page and ghost wrote a Globe op/ed for an executive. But to be both personally published there and have my own kiddo on the front page in a short time span is a bit surreal.)

But there he was on Tuesday, May 23. It happened fast; first I was providing a quote for the story, then we had a photographer at our home for over an hour trying to cajole Charlie into some semblance of cooperation and something adjacent to a decent pose. Then the story ran, digital first, with my quotes supporting FDA approval of Elevidys, the gene therapy Charlie received through clinical trial.

The role of parent-advocate found me; it was not even a choice. Fighting for my boy frequently takes me out of my comfort zone, but it is not optional. I wish Charlie had been on the front page of my revered Globe for almost any other reason. Sometimes life hands you a role you never imagined, but you perform with gusto because there is no other way.

Read the story here.