Jake's Blog

Bill and Lilly Ann

Lilly Ann and her parents.
Other than my wife Beth, nobody has written here on this blog.  Until today.  Bill Brooks is a fellow NF Dad who has amazed me since the day I met him. He is passionate, compassionate, smart, funny and NO time for BS.  His daughter, Lilly Ann, has NF just like Jack but has had many challenges and has approached them with a grace and dignity that astounds me.  I have met her a few times and I can... Continue Reading

Auction items! 5th Annual CureNFWithJack Golf Classic

1980 Team USA Captain Mike Eruzione SIGNED jersey
Mike Eruzione SIgned Jersey, Captain of TEAM USA 1980 Gold Medal Zac Brown SIGNED acoustic guitar! Beautiful Home on Kiawah Island! Rodney Harrison SIGNED jersey Chipper Jones SIGNED Braves Jersey Brian Urlacher SIGNED jersey Dallas Cowboys 1995 TEAM SIGNED Ball Dan Marino SIGNED football Joey Lagano SIGNED Car Door and front end BO Jackson SIGNED football These are just a FEW of the items... Continue Reading

"I don't need that. Just give me the mask and let's do it".

My saddest moment from the film Jack's Journey.  His port I loved and hated.
This week is a big week for Jack and the Burke family.  You may recall back in October of 2013 Jack started his chemo regimen.  Prior to that he had to have surgery to implant the chemo port in his chest.  Well, this Thursday after almost 27 months he is going to have it removed!  The doctors decided that he has had enough non-growth and stability in his brainstem glioma that the port can come... Continue Reading

Goodbye 2015! Hello 2016?

Happy New Year from Jack and all of us here at CureNFwithJack.  I should start by saying thank you to all of you have donated their time, talent or treasure.  We are deeply grateful that so many of you have made Jack's battle part of your life because I know you each have your own struggles.  We NEVER take for granted what you give us through the myriad of ways that you do.  For many, this day... Continue Reading

The Good, the Bad and the Ugly

Jack and Luke with an American Icon and great guy, Clint Eastwood
Sorry for the delay on this update about Jack.  There is a lot to share.  Let me first explain the title of this blog.  As the attached photo shows, we had the opportunity to meet Clint Eastwood when he was in our neighborhood filming his latest movie. What a wonderful person.  85 years old and after a 10 hour day of filming he could not have been more gracious with his time.  He talked with the... Continue Reading

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