Jake's Blog

A harsh dose of reality and a path of continued hope

On my post last Friday, I told you I would update you and share events with you whether it be good or bad.  Here goes: You may recall that Jack was having some issues with pressure on his brain due to a chiari malformation which is causing his brain stem and cerebral tonsils (yes you have more than one set of tonsils apparently) to get squeezed together causing some headache pain.  We were... Continue Reading

Jack Burke, NF, MRI's and Progression

If you are reading this then you were probably redirected from facebook. The last 24 hours has been very challenging for us.  As you may know, yesterday Jack had yet another MRI.  Again, he came through it amazingly well and is a very courageous 8 year old.  I'm saddened to say that he has become used to a process that no child should get used to. Ever.  I posted the update yesterday about his... Continue Reading

Welcome to CureNFwithJack!

Jack, Beth, and Jake
We have created this website to provide awareness about Neurofibromatosis (“NF”), a genetic disorder which has affected our son Jack. We hope that creating awareness of NF, bringing people together, and supporting the medical community in its research endeavors will lead to the day that NF no longer exists. Please read and learn about NF, Jack, the local community, and what you can do (no matter... Continue Reading