The Game Changer, Reggie Bibbs

The Game Changer

My friend, Cathy Bilotta, shared a Facebook post this morning with an article from my hometown newspaper, The Boston Globe. Usually when I read the newspaper I scan the sports section and look through the articles pertinent in the news or business. Newspapers connect you to the world. They connect you to people. Your heroes and your villians are written about daily. For me it is usually those people that inhabit baseball parks, football fields or hockey rinks! Messrs. Brady, Ortiz, Bergeron, Orr, Nicklaus and others. Those guys are amazing at what they do. The terms hero or heroic are often attached to their names. I have often attached that monniker to them.

And then today. Today I saw my REAL hero in my hometown newspaper. Reggie W. Bibbs and I are acquaintances at best, Facebook friends for sure and have an unfortunate tie that binds us, Neurofibromatosis. Like my boy Jack, Reggie has NF. I am merely the father of someone that has NF, so I can't fully understand Reggie's battle.

I've met a lot of people through our NF journey, both in person and on line. I have read COUNTLESS stories, endured painful discussions with other parents and I have watched people die from NF. Our family has seen and experienced a lot of pain. Reggie, well Reggie is on a whole different level. Reggie has been a victim of unspeakable crimes against HIS humanity during his life. Reggie is 52 years old. Born in a time when little was known about NF and also born in a time when people were much more blatantly cruel to those who were perceived as different. But I don't want to write about that mess. I want to write about Reggie's humanity and how, in spite of years of terible treatment by others, despite enormous physical challenges, painful tumors that would knock most of us down, Reggie stands up!

Reggie, along with his good friend (and one of my other heroes) Lou Congelio started the "Just Ask" foundation to help people undertand him and OTHERS who battle Neurofibromatosis. What kind of man rises above the world around him that would treat him so cruelly? What kind of a man pushes aside his physical pain so that he can advance the cause for others who are in pain? What kind of man puts himself, his true self in front of the world day after day to help find a cure for a disorder? What kind of man is brave enough to embrace a world that is often not willing to be embraced? Lastly, what kind of man is laying his own life down in hopes that his efforts will cure your boy?

I can tell you what kind of man. A heroic man. A game changer. A hero. I invite you, no I implore you, to learn more about Reggie and his Just Ask foundation at

Read the article in today's Globe here:

CureNFwithJack continues to try to do our part in finding a cure too!  In 9 days we will be hosting our 5th Annual CurenFwithJackDC Golf event.  You can still get a spot to play, donate or volunteer.  More info about the event can be found here:

Tomorrow there is hope and you are aming the reasons why.  Don't ever forget that. EVER. #ENDNF #FNF


Jake, Beth, Jack, Luke and Grace