Cupids, Sigma Chi’s, and Front Row

It has been almost 2 months since my last update and for that I apologize.  It means this one may be very long.  It also means that I found it hard to write that last few times I began an update. I am not sure why honestly.  These last 6-8 weeks have given us more to update you on than any other block of time in recent memory.  I just didn’t have it in me before today.  So, in no particular order of importance but more likely chronologically, here goes.  

When I last left you Jack had just turned 9 and was continuing his chemotherapy treatments (this is where I have left off when I tried to write you several times these past few weeks). He is managing amazingly well and has missed only one treatment due to low counts.  He does get fatigued and tired but that is about it. My concern is always what he does not share. He is an incredibly resilient kid and we have to pull stuff out of him sometimes.  Remember he was suffering from multiple headaches every week for almost 9 months and never told us which led to us finding his glioma!  

Jack has been incredibly supported and continues to be by kids who are donating their “birthday money” to CNFWJ or baking cookies or creating custom bracelets that they sell to donate the proceeds.  Others are sending him and his sibling’s gifts and cards and it really helps him.  The generosity is truly the most genuine you can receive and it is wonderful.

On February 15th we participated in the Cupid’s Undie Run in Boston.  We ran through Fenway Park with about 600 other runners.  200 of the runners were on Jack’s teams in Boston. We were the number one fundraiser in Boston, Atlanta and the entire country.  Our 11 CNFWJ teams across the country raised over $200,000 for NF research.  Jack was highlighted in articles, on a news program (where he absolutely killed it) and had a prominent role in the success of the day.  Many of you ran, supported or donated to the run and we can’t thank you enough for shattering every record there was for this event.  Over 350 runners nationwide from 7-70 years old supported this cause in Jack’s name. The whole room sand a special “Happy Birthday” to Luke led by our good friend Hank Morse! 

A week later my high school friend Larry Gordon sent me photos of his girls basketball team what showed them wearing custom-made CNFWJ basketball jerseys.  They dedicated the tournament to Jack and they went on to win second place overall but were in first place here in the Burke house.  Amazing really.  In addition to the awareness, they raised $500.00 for research!  

Upon out return to Atlanta we needed to take a breath and recognize that essentially our 2013 fundraising was over.  The tumors still remain.  I hate that.  However, between Cupid’s activity, our events (golf, yard sales, wine tastings. etc) we raised over $400,000 in Jack’s name for the Children’s Tumor Foundation! Amazing really.  You all are!  And now we reset the clock to $0 and start again.  

Some young men who stopped by our yard sale last year matriculate at the University of Georgia.  They met Jack, asked about him and NF.  They took a group photo with him and wished us all well as they took a truckload of stuff!  A few weeks later I got an email from Chad Camp, one of the guys who said that he and his fraternity brothers want to do “something” for Jack.  The eternal cynic I am, I was not optimistic.  Well, I was proven WRONG again.  The guys from UGA Sigma Chi sent me this website announcing their event http://derbydash2014.com/home.html   Perhaps one of the coolest things I have ever seen.  The entire Greek system is getting behind Jack and I am blown away.  

Several friends got together this year with the Front Row Foundation and raised money to send Jack and his family on an once-in-a-lifetime trip.  About a week ago we had the unveiling of that trip and in April we will be going to Myrtle Beach so Jack can be in the “Front Row” at a magic show.  We are so excited to have the opportunity to share this special trip and event with Jack and through friends like Helen Brown supporting us we know we are loved.  

On March 5th we celebrated Gracie’s 3rd birthday.  She shares her birthday with he “Mama” Mary Anne.  The best mother-in-law a guy could have, period.

We announced this week the Third Annual CureNFwithJack Golf Classic will be held on “Cinco de Jacko” May 5, 2014 at the Alpharetta Athletic Club.  This year we are sure to sell out and have already secured some great sponsors, raffle items and auction items.  If you want to come play in this great event just click https://grow.ctf.org/curenfwithjack2014 and sign up!  With our friends Matt Benson, Dan Allen, Pat Kelly and Mike Nicklaus we will be hosting TWO more tourneys in the early fall in West Palm Beach and Washington, DC.  These events are the backbone of our fundraising and awareness campaign and simply would not happen without many of you volunteering, donating or playing!

Finally, our goals are to continue to help JACK raise money and AWARENESS to stop this awful disorder.  Perhaps it is a result of us being more involved but I hate the fact that I am personally aware that about 6 kids have died from NF since October.  Hate it.  So I keep going. We keep going. We seek out and invite you and your friends to keep going.  I want every year to be the last year we do the tournaments and events so that one year we have a round of “Victory Tournaments” and figure out what other charity needs our help because we went ahead and cured NF!  

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

Thanks,

Jake, Beth, Jack, Luke and Grace