Jake's Blog

Goodbye 2015! Hello 2016?

Happy New Year from Jack and all of us here at CureNFwithJack.  I should start by saying thank you to all of you have donated their time, talent or treasure.  We are deeply grateful that so many of you have made Jack's battle part of your life because I know you each have your own struggles.  We NEVER take for granted what you give us through the myriad of ways that you do.  For many, this day... Continue Reading

The Good, the Bad and the Ugly

Jack and Luke with an American Icon and great guy, Clint Eastwood
Sorry for the delay on this update about Jack.  There is a lot to share.  Let me first explain the title of this blog.  As the attached photo shows, we had the opportunity to meet Clint Eastwood when he was in our neighborhood filming his latest movie. What a wonderful person.  85 years old and after a 10 hour day of filming he could not have been more gracious with his time.  He talked with the... Continue Reading

Sometimes the best plans get, well, interrupted...

For the past 4 years CureNFwithJack has been hosting golf tournaments.  It has been our major fundraising and awareness raising activity.  On Friday, we will be hosting our 4th tournament in Washington, DC thanks to Matt Benson, Carol O'Connell and their committee.  This represents our THIRTEENTH CNFWJ golf event in just 4 years.  It is an incredible amount of work to pull off a successful... Continue Reading

Neurosurgery and corporate speaking engagement. How was your day?

Jack spoke to an incredible group of professionals about making a Great Story!
This past Monday we had to bring Jack for a 2 hour, full-spinal MRI and true to form he handled it like a champ while his Dad limped along through it.  As you may recall, it was discovered that Jack has a syrinx on his spinal column near the base of his brain.  These can be very problematic and the doctors wanted to investigate further so this scan was performed.  All of that is scary. However,... Continue Reading

A complex relationship with a machine

Jack Burke
As many of you know, Jack had his quarterly MRI last Monday.  These exams are always anxiety producing regardless of why you find your child in that big constricting tube.  It has become a norm for us and for Jack.  It is part of his life and will be for the forseeable future and it is a bittersweet process.  These machines tell us so much about Jack and I thank God for the fact that the... Continue Reading

This cuts close to the bone...

Jack and Drew- 2 warriors
It has been a while since I last wrote an article here, in fact, I have not had this much time between articles since I started to write down my thoughts about all that encompasses Jack's Journey.  This is not, mind you, because there has been nothing happening. On the contrary actually.  But I write only when I am "moved to do so".  It's hard.  Trust me.  But I have been moved to write today... Continue Reading