Time Will Tell

3 months ago we hosted our very first CureNFwithJack Gala at the Roaring Social here in Alpharetta as part of our golf fundraising weekend.  For 10 years we have hosted golf tournaments but up until 11/6/22, we had never hosted a fundraising gala.  Beyond raising dollars for specific research initiatives, we wanted to come together as a community and recognize some very important supporters from Atlanta Charity Clays who have been incredibly supportive of CureNFwithJack’s mission.  I was honored to introduce and recognize our special guests Bennett Brown, Johanna Ehlers Tate and Eric Hermanson.  Beth updated the group about what work we have been doing to help achieve our goal of more treatments and a cure for NF.   Dr. Rob Avery provided us an update on some research and explained the importance of every dollar we raise.  Mike Flynn, an NF Dad, then spoke about the impact CureNFwithJack has had on his family, their daughter and her journey to get the appropriate treatments for her, which can be a very daunting process. 

We had an auction of pretty amazing prizes, a video greeting from actor Chris Pratt, some dancing, music and wonderful food and drink.  The crowd, dare I say was incredible.  Mixed in there in a pretty significant way was Jack Burke.  His speech was inspiring.  BUT let me rewind the clock to 3 hours before…

It is always nerve wracking for me before these events.  There are a million things that have to go correctly and thank God for Beth, Nani Parker, Janie Valencia and so many more people that made it all happen. We had some great help from Magnolia Golf Group as well this year.  While most folks were at the hotel/venue, I was at home with some in town guests (family really) and Jack getting ready for the evening.  And that’s where I started to inquire.  “Jacko, do you want to review your speech for tonight?” His response, “Nah, I’m good Dad, thanks.”  I looked over at my buddy Brian White and he did not react other than an eyebrow raise.  I said, “Jack, are you sure?  This is a big crowd and your messaging is going to be super important.  Why don’t we review some of the main points at least?”  Again, he looks at me and said, “I got it Dad.  I got it!” 

Now what you may not know is that I was  bit nervous about MY small part so I was wondering why this 17 year old was not!  I called Beth and she rightfully said to not worry about it and he’s going to say what he wants to say.  I anxiously hung up the phone and then told him to go get ready for the night.

About 30 minutes later we headed over to what was an amazing site to see and very quickly the night began to move.  So many people to say hello to and welcome to Alpharetta.  So many new people to meet and thank.  It was all wonderful.  The program started as I earlier described and with my little part well behind me, I grabbed a drink and stood over stage left to watch Jack get ready for his speech. 

I was standing with my friend Jenn Wade resting my beer on one of those high top tables as he was introduced to the crowd.  He was met with a loud uproar and cheer usually reserved for famous folks. I could see he was both appreciative and a bit embarrassed by the attention.  I trusted that he had his message ready but as his father, I was still a bit nervous for him until he started to speak.

He started with “Hello, I’m Jack Burke.” As if anyone didn’t know and went right into his thank you message to everyone there.  I watched him now, no longer my little boy but a fierce young man who has been fighting an unrelenting battle for his entire life.  I watched as he spoke about that journey some of which was already known by some in the room and many hearing the details for the first time.  There were wet eyes and smiles and you could hear a pin drop as he effortlessly described a battle he faces with dignity, grace and passion.  He recognized other NF warriors who were present and was appreciative of their attendance and acknowledging that they uniquely know what he was talking about.  By now, Jenn knew I was becoming a puddle on the inside and she just said one word through her tears…AMAZING.  He continued a bit longer and moved to the present day and talked about how he, like many other NF patients, are now taking a drug therapy to hopefully shrink his tumors and offer him some relief.  He discussed how the audience that night was partly responsible for bringing that drug to market through years of support which led to dollars for that research.  The drug gives us hope he said.  Maybe it will work.

Then he said it and I didn’t see it coming.  I swear he looked at me briefly, then looked at the audience and said it.  “Time Will Tell.”  “Time Will Tell” and he just kept going.  He said it like it was nothing but his words stuck with me for an extra minute.  How do you face “Time Will Tell” everyday?  How do you do so as a little boy who is now a man?  How do you keep going and inspiring others to do better and be better?  How do you get up and put those feet on the ground every day and go?   

I wonder how would YOU deal with “Time Will Tell”? As I said, that was 3 months ago today and as I write this Jack is heading up to Washington DC to see his medical team for a series of appointments over the next few days.  He will have a myriad of tests including a full body MRI and maybe Time Will Tell. He will be like he always is…pleasant, inquisitive and probably a bit irritated.  Despite that he will muscle through with his incredible Mother by his side.  We will hopefully get good news on this visit like other NF families sometimes do.  I am not contemplating anything else right now but I will manage my own “scanxiety” that I know is shared with his brother Luke and sister Grace who stay back in Georgia with me while a bit of their young hearts and minds are with their courageous brother.

Regardless of what news comes, we will continue accordingly and we will do so with the comfort of knowing that he is not alone.  Our troubles a bit assuaged by the constant reminders of the support he receives through your comments, texts, emails, donations and your thoughts for him when you find yourself alone hoping good things for him. We’ll take them all because after all Time Will Tell.

Tomorrow there is hope and YOU are among the reasons why.

Don’t ever forget that.  EVER. #ENDNF

Thanks,

Jake, Beth, Jack, Luke and Grace