Corrections: The Northern Star incorrectly reported Tyler Neppl has the rarest form of neurofibromatosis. Tyler has NF1, the most common form. 

The Northern Star incorrectly reported Shaun Neppl said, “Cancer alone itself has pretty much … taken a lot of my family members away and this was just a form of cancer, but it hit me in the heart what it does to kids. And then the peer pressure they get from the kids around them that don’t understand, that give them a hard time, that bully them, that you know, don’t understand what they’re going through and I just, it just hit me in the heart that this is something that I should take on.” Marc Brooks said that. 

A Denver motorcycle club plans to ride to DeKalb non-stop on June 30 to honor a 10-year-old Sycamore boy with neurofibromatosis (NF) and raise money for the genetic disorder.

The Smokin’ Guns are preparing for an iron butt ride, an over 900 mile trek to meet Tyler Neppl, who they consider a hero, said Shaun Neppl, Tyler’s father.

NF is a genetic disorder where people lack the genes that prevent tumors along the nervous system, according to the National Institute of Neurological Disorders and Stroke. These tumors grow on nerve endings in or on the body.

Tyler, who has the rarest form of NF, was diagnosed at 9 months old and is the only member in his family to have the disorder, Shaun said. Tyler has undergone chemotherapy because he developed six tumors on nerve endings, which have caused him tremendous pain — pain so critical that when Tyler falls down due to childlike play, he cries for about 30 minutes, Shaun said.

“Cancer alone itself has pretty much … taken a lot of my family members away and this was just a form of cancer, but it hit me in the heart what it does to kids,” Shaun said. “And then the peer pressure they get from the kids around them that don’t understand, that give them a hard time, that bully them, that you know, don’t understand what they’re going through and I just, it just hit me in the heart that this is something that I should take on.”

All donations from the ride will be given to the Children’s Tumor Foundation, a non-profit organization dedicated to improving the well-being of people with NF.

“This disorder affects a lot of people and these kids, we can really change their quality of life from childhood on through adulthood,” said Allison Cote, community relations coordinator for the Children’s Tumor Foundation . “We can get some good research out there and some good resources for them.”

Denver to DeKalb

The Smokin’ Guns Club is made up of active and retired law enforcement who work to help community members and students interested in law enforcement careers. This will be the second trip in two years for the group, consisting of eight motorcyclists, said Marc Brooks, coordinator of the event and member of the Smokin’ Guns Club.

The idea came from Greg Davis, fellow coordinator and member of the Smokin’ Guns Club, in 2013 after Brooks made a 14 hour solo trip to Chicago in support of a friend with cancer.

The bikers will begin their 15 hour journey at 1 a.m. in Denver and arrive at the DeKalb Harley-Davidson, 969 N. Peace Road, around 4:30 p.m. The group will make a few pit stops along the way to eat and drink.

The motorcyclists will get to meet Tyler and his family at the dealership and present a check gathered prior to the trip and along the way, Brooks said. The next day, the group will go to Lake Shore Drive and Navy Pier to have lunch and treat Tyler.

“Hopefully we continue to bring awareness because people see cancer or hear cancer but don’t really understand what NF is,” Brooks said.