About Stephen Mack

Recently, Stephen Mack finished a 2-year term as President of the Joubert Syndrome Foundation and still serves on the Board as Immediate Past President. His most important role among all of this is as husband to Denise, and father to Isabella, Christian, and Abigail. When Isabella was born, she was diagnosed with a very rare condition called Joubert syndrome. From that moment forward, Dr. Mack has been dedicated to education, advocacy, mentoring, and support of research into rare diseases. Stephen is a proud NU alum (WCAS ’96 – GO CATS!) and has been regularly engaged in alumni events and support.

Dear Dad

You are an amazing father. You need to hear that more often, and hopefully, in ways big and small, I have been able to tell you and show you that over the years. Here, though, I get to write it down. And that gives me a chance to express in words how much […]

This journey we call fatherhood is extraordinary…

This journey we call fatherhood is extraordinary. In every way. From the birth of my first child, to the adoption of my second, to the arrival of my third, I am in awe of the little lives that have been entrusted to my care and my love. As much as I hope to teach them, they, by far, have taught me way more than I thought even possible. Through their adventures, I see the world in bright, new colors. Through their sleepy eyes, I am reminded, myself, to slow down. I relish in the pure bigness and unencumbered love they radiate towards me. How can I possibly hope to live up to their expectations of me? What can I possibly give to them that is more valuable, or at least of equal value, than the bursting joy they so freely share with me each day?