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Iron Butt 4 NF

By January 17, 2017February 28th, 2024Awareness, NF1, Story of NF, Ways to Give

By Greg Davis

Iron Butt 4 NF, an odd name for a fundraising event wouldn’t you say? If you’ve ever ridden a motorcycle for hundreds of miles, you can relate to the title.

The idea for the marathon ride surfaced shortly after a young NF Hero, Tyler Neppl, started a voluntary chemo treatment encompassing 52 weeks, one session of chemo per week. The pain involved in this treatment is unmatchable. Tyler’s strength and will to fight is what inspired us to create a challenging ride to show our support and love for him while raising awareness about neurofibromatosis.

When we started there were nine of us; there are now 15 who ride the distance, and one person who drives the chase truck and trailer. We pick up a couple more bikers midway, and a posse of Chicago riders meet us near our destination in Dekalb, IL. It’s special for all of us, something we won’t miss!

The old guy of the bunch, my father, has known Shaun Neppl as long as I have. The old guy is 71 and rides with grace, determination, and tremendous heart. That’s Tyler’s energy feeding his drive, that’s what feeds the IB4NF. During the IB4NF we experience powerful moments of reflection. There are many peaks and valleys on this ride. We leave at midnight, ride through darkness in the plains of Colorado and Nebraska, where animals can jump in front of us in an instant. We endure temperature changes from 40 degrees to 100 degrees. We experience element changes of rain, wind, tornadoes, and fog. And welcome all with open arms. Why? Because it enhances the mental and physical challenge to grind out the bad weather, for our fighter, and the all fighters who battle just like Tyler. Each rider fights fatigue, it’s just a matter of when it’s your turn.

There are times where the hum of an engine quiets the wind that’s chattering your ears. A sense of calm allows your mind to drift from the centerline, allowing for personal reflection. When that point is reached, we each then realize why we push the limits, riding in undesirable circumstances. And what makes the ride so rewarding is what Tyler has taught each of us without him, or us, ever knowing it. Tyler is of great power, mind, and spirit! His fight is tenacious, his courage stretches beyond cavernous walls of the Grand Canyon, and his spirit (however challenged) is addicting.

The IB4NF is an annual ride, not just by our choice, but because of Tyler’s spirit. In 2014 we set out to make a little boy’s day with shiny chrome, loud bikes, and some long distance support. Truth is, Tyler made our day and changed each of us. Tyler captured our hearts with his wit, charm, competitive spirit, and sheer excitement. I’ll never forget one of Tyler’s first questions to me once he learned that bikers were going to visit from Colorado. He asks, “Will you have a hundred bikes?” And he was dead serious! I said, “We’ll bring as many as we can buddy, not sure about a hundred.” In 2016 we were closer, still a few short, but we’ll get to a hundred, I promise.

The Iron Butt 4 NF is more than just a ride, more than a journey… it is a quest for a cure.

Visit the CTF Calendar of Events for information on the 2017 ride, taking place in June.


(Photo Left: L to R Greg Davis, Tyler Neppl, Marcel ‘Scooter’ Voeglein, and Tyler’s brother Carter; Photo Right: Group of riders on the 2014 trek) (All photos credit: Steel a Horse I Ride Photography and 1582 Photography)