What does your bracelet mean?

In 2008, I was at Eastern Association of Colleges and Employers (EACE) annual conference and I asked my friend Jake: “What does your bracelet mean?”  It was simple question, but it wasn’t a simple answer.  Jake told me he was wearing the bracelet for his son Jack.  The blue and teal bracelet was to bring awareness to a genetic disorder called Neurofibromatosis (NF) and his son Jack has the disorder. If you are like me, you probably have never heard of NF.  It is a genetic disorder and wherever you have a nerve ending, you have the potential to grow a tumor.  Yes, I know that is a VERY simplified answer and there is a lot more that goes into NF.  Jake’s son was diagnosed when he was two years old and in 2008 he was three.  At the time, I didn’t realize that I was the first person outside of the family/close friends, that they had told about their son and the battle he was fighting. Since the day I asked about the bracelet, I have been praying and doing what I can for Jack.

Since that time, the Burke family has started Cure NF with Jack.  Jack raised over $400,000 (2013-14) for NF research through Cure NF with Jack.  Beth (Jack’s Mom) and Jake have done so much for NF research and awareness.  They have opened their hearts and tell Jack’s story to others, so they can bring awareness and raise money to find a cure for NF.

Fast forward…….2013

In 2013, my involvement with Jack changed.  Again, this change occurred at an EACE conference.  For the past nine years, I have been involved with the Front Row Foundation.  It is a charity that was started by a couple of friends.  Their mission is put individuals battling critical health challenges in the Front Row of their dream live event.  The Burke family is loved by so many people and they do so much for others.  My friend Trent and I made a decision at EACE that we were going to nominate Jack for a Front Row Event.  Here is a little insight to the giving heart of the Burke family.  In 2008, I wanted to nominate Jack, but Jake’s response was there were others who needed it more.  This time, I wasn’t asking.  After the conference, we started to put things into motion.  Shortly after we started the process for Jack to be a Front Row Recipient, he was diagnosed with a glio on his brain stem.  When most people hear that diagnosis, they think cancer, but it’s not.  However, the treatment protocol for NF patients is chemotherapy.  As of today, Jack has completed approximately 25 treatments in his cycle of 52 treatments.  In October of 2013, I had the honor of meeting Jack and Beth for the first time.

Now for the fun part………

In record time Jack was accepted by Front Row Foundation for an event.  My goal was that we not tell Jake and Beth about Jack being a recipient until the fundraising was complete. As I mentioned before, Jack is loved by many people and most have never met him.  I know Jake through professional organizations that we both are a part of EACE and National Association of Colleges and Employers (NACE).  I sent one e-mail to my friends and colleagues (most are like family) and in about 72 hours the money was raised for Jack’s Front Row Event!  He wanted to go to a magic show and the planning began.  In April of 2014, Jack and the entire Burke family went to Myrtle Beach for his Front Row Event. I was honored to attend as a volunteer coordinator for Front Row.  This was my first Front Row event and words can’t describe what it was like to part of this day, it was life changing.  I don’t use that description lightly.  Here is a video that Vector Marketing (where I work, when I am not blogging! LOL) produced in partnership with Front Row:

During the Front Row event, I captured this picture:

Jack Burke FRF event-0651

Here is what Jake says about this photo:  “Not sure what you see in this photo of Jack from his Front Row Foundation experience. What I see is a moment of pure excitement, joy and wonder. All the things that kids like him should be focused on as they discover who they are in this world. What I see is success. A successful trip that met the goal of all those involved and then some. I see a kid who has forgotten about his tumors, his therapies and his damn chemo. I see a kid thankful for what he is seeing. I see astonishment and wonder. Thanks to all of Jack’s friends and fans near and far who helped make this trip happen. And thank you all who contribute your time, talent and treasure to help us find a cure. #endNF. #curenfwithjack.com”

Jack is someone who lives life in the front row and a hero!  Thank you for reading about how asking one simple question six years ago changed my life!  #EndNF

 

 

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