Jake's Blog

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

It's working- Thoughts from Jack's Mom

CNFWJ: IT'S WORKING It's Jack's Mom here. I know, I know, the blog is Jake's thing - and I'm so grateful for that (more on that later). But I can't help but share something that hit me like a ton of bricks this past week. Those that know Jake and I know that we are connected to and fighting for each and every individual who is affected by NF. Many of them we do not know. Some of then have touched... Continue Reading

Went shopping for groceries and got some perspective

If you have kids and have ANY sense at all you know that taking them grocery shopping is just about the worst idea on the planet.  Well, guess what?  On Sunday, Beth and I were running around with all 3 kids (10 and under) trying to finish errands and so we HAD to go to our local Kroger store.  (Quick digression that Kroger also happens to be a big supporter of CNFWJ)!  Anyway, there we were on a... Continue Reading