"Simpler Times:" A Letter on Links for Lauren

Author: Ryan Geier

Published On: 09/14/2021

"The pandemic has created a new reality for us all. Things we didn’t even realize were conveniences have now left us wishing for simpler times.  “Wishing for simpler times” is how I would describe a baseline state-of-being for a family dealing with an NF diagnosis.  COVID has forced us all to adapt to our new world, but for those of us affected by NF, it’s a reminder that NF didn’t take a vacation from our everyday lives.  As a father of an 11-year-old daughter with NF1, a longing feeling for “simpler times” is always present – an itch that just can’t be scratched.

Our family started Links for Lauren, a charity golf outing, 9 years ago for one purpose: to hasten advancements for NF treatments and (god-willing) a cure.  This became an annual event that my wife and I have a love-hate relationship with. We often joke that it’s like planning a wedding every year.  The effort that goes into planning and executing an event like this requires a significant time and energy commitment that I complain about every year – every year, until last year. 

Like the rest of the country, we had to press pause on Links for Lauren in 2020 because gathering 200+ people at the peak of a global pandemic was just not an option.  I was shocked that I found myself complaining about the event I couldn’t host, while every other year I’m complaining about hosting it.  Maybe I’m just a complainer!  In reality, I realized just how much this event has become therapy for my family.  The turnout of our friends, family, and colleagues each year is a reminder that we’re not alone in our fight, and like the saying goes, “absence makes the heart grow fonder.”

We were able to resume Links for Lauren this year and hosted our 8th event on August 21st in Madison, WI.  All the annoying things I complain about every year were still present, but what was also present this year was an overwhelming sense of gratitude.  I found myself smiling and appreciating the simple things despite the normal chaos that day forces me to work through.  This year just felt different in a way that I’m still trying to attach words to. 

Maybe I’m getting sentimental as I get older, but whatever it is, it’s a feeling I hope you all experience in your lives at some point.  I still have that longing of “simpler times” for a life without NF; however, I know that my family is truly blessed.  While this event was created for its namesake – my daughter Lauren – it really has become a way for us to work towards something bigger: my NF family!"

Humbly,

Ryan Geier
NF Network Board President and NF Dad