Category: Uncategorized
Posted on October 12, 2023
You’ve always had my back
Dear Friend, I hope this finds you well and you are enjoying your week. I asked my Dad if I could write to you directly as we are approaching the 11th annual CureNFwithJack Golf Tournament and the Second Annual …
Updated on March 12, 2021
So, Now I Am Giving A Piece of Myself To Help Find A Cure?
On Monday, we went to visit Jack’s NF doctor, Oncologist and Neurosurgeon to follow up on the next steps for his treatment post MRI. Jack’s scan showed some disturbing swelling of the ventricles in his brain. The term …
Updated on February 7, 2023
The Speech
He’s done this before. I’ve lost count now in the past 10 years as to how many times exactly he has done this. He has been in front of different audiences: One hundred NF families Fifteen 2nd grade …
Updated on April 17, 2020
Clark Kent, the real hero
I think I have always been a “Clark Kent” guy. There, I wrote it. After almost 52 years I realized that he is the hero. You see, Clark is the mild-mannered, behind the scenes kind of guy who …
Updated on February 4, 2020
Jack O’Brien Burke – An impactful 12 Years with Much More to Do.
Every parent gets excited about a child’s birthday, right? Three of my favorite days of any year are the birthdays of my kids. Today is my first child’s birthday. Jack O’Brien Burke made me a father and gave …
Updated on June 28, 2018
He Stood Up and Started it All
We knew Jack had NF right after his second birthday. For quite awhile Beth and I were pretty devastated by the news that our boy had a genetic disorder. In fact, when we initially found out we were …
Updated on June 28, 2018
A Coach who became a Friend who became an Advocate
It is day 9 of NF Awareness month. As you may know, many kids with NF struggle with core strength issues and other side effects that make it relatively more difficult to play sports. About 6 or 7 …
Updated on June 28, 2018
The Hope at Hopewell and the Bowl of Bracelets
Many of you know that Jack recently started middle school. Now, middle school is a big transition for anyone and my estimate is that about 99.9% of the adults I talk to hated middle school for a myriad …