We reposted this essay in honor of Hannah Rose Ginion who died December 28th, 2014 from globoid cell leukodystrophy (or Krabbe disease). We want to remember Hannah and acknowledge how she and her family advanced the cause of helping children affected by leukodystrophy. My thoughts have been with the Pizzullo-Ginion family since word spread about Hannah's death on Sunday. I can't put into words what it meant to be in the PICU with Cal when my oldest daughter, Camille, texted m

If you live in Philadelphia, you have seen the billboards on I-76 or the television spots advertising one of CHOP's biggest events: The Black Tie Tailgate. This year's BTTG is January 29th, and if you are like me, you never paid too much attention. Pat and I are not the sort of people who would spend $225 a ticket to go out for the night. Pat has not put on a tuxedo since our wedding in 1994 and I hardly wear dresses, much less formal-wear. And yet, this year Pat and I are