Dear Friend,

I hope this finds you well and you are enjoying your week.  I asked my Dad if I could write to you directly as we are approaching the 11^th annual CureNFwithJack Golf Tournament and the Second Annual Great Jacksby Weekend Extravaganza.  Remember how fun it was last year?! We are less than a month away and I thought I would provide you with a little nudge or reminder that we need you!  We are trying to raise funds this year to fund a MGH/Harvard lab dedicated solely to NF. Specifically, we want to fund an additional fellow to advance new and promising gene therapy research.

Since I was a little boy of 6 years old, some of my best memories have been at the golf events with many of you year after year.  Every year is a great event with a few hundred players, volunteers and friends.  And last year was incredible at the Roaring Social where attendees provided record-breaking support to fully fund a gene therapy project at UAB! Some of those years found me not doing too well health wise. There were surgeries and the year I was on chemo was pretty tough but you always, always had my back.

In the midst of those hard times, I always looked forward to getting together with all of you to try to bring awareness about NF, raise money for research and share some of my very personal journey. The past few years I have done a little less of the latter because I sometimes got tired of talking about it. The thing is, my NF has not gone away.  I still have my brain tumor, syrinx and several complex tumors (plexiform neurofibromas (PN)) and some other challenges.  I have been on an oral chemotherapy, Koselugo, for about a year now, but have had to discontinue it for a little while.

I mentioned that you’ve always have my back, well right now my literal back is messing with me pretty good.  Due to another complication of my NF, I have been battling a painful case of scoliosis.  Surgery is the only potential option that has been discussed but delayed because when you have NF the procedure does not always work like it does in people without NF.  My parents and I (although I am 18 now and can make decisions) are in the process of figuring out what to do an am hoping that I don’t have to have yet another surgery. Unfortunately, the medical journey I describe is the path of too many children and adolescents with NF.

Last year at the Great Jacksby party you may have heard me say that with NF “time will tell.”  I hate that fact – but it is true.  Well, here we are again and we will see if time will tell for what is next on my journey and the journey of all of those affected by NF.  While my back is trying to mess with me a bit, I remain strong and determined to overcome this latest obstacle and remember some other people have it much worse.  I am just asking and hoping you can join me and some other really awesome people next month so we can get one step closer to what we all want, which is a cure for NF.  I appreciate your support in the past and hope to see you again next month!  Below is all the information you need for the events!!  Please email me back with any questions!

Events

Thanks,

Jack Burke, Co-Founder