Shine a Light Walk creates community for NF patients, raises money for research

By Cami Mondeaux | [email protected]

The Children’s Tumor Foundation hosted the Shine a Light Walk providing a space for fundraising and community building at Sugar House Park May 11.

The walk was intended to unite families and friends to bring neurofibromatosis (also called NF) out of the shadows and eliminate stigma against it. 

“It’s an event where [NF patients] can find a friend and don’t feel so different,” said Brandie Evans, Children’s Tumor Foundation (CTF) Utah Leadership Council representative. 

NF is a rare genetic disorder that causes tumors to grow on nerves throughout the body. The lifelong disorder affects one in 3,000 people and can affect bones, vision and other bodily systems, according to CTF. 

The disorder is different for everyone who has it, Evans said. 

Evans has a 7-year-old daughter, Rylie, who has been diagnosed with NF Type 1, one of the three distinct classifications. This distinction commonly affects cranial nerves, causing Rylie to be blind in her left eye. 

These tumors were first diagnosed when Rylie was 19 months old and her family has “found a way to work around those,” Evans said. 

There is no cure for NF, but there are extensive treatments for the disease including surgery, chemotherapy and medication. 

The Shine a Light Walk served as a way to spread awareness of the those who live with NF while raising money for research. 

All proceeds generated from the walk went toward CTF, the leader in the fight to find a cure for NF, according to the foundation’s press release.

The event attracted nearly 500 participants, raising more than $30,000, according to Rebecca Harris, senior manager of public relations for CTF. 

“It was a wonderful day,” Harris said. 

Before the walk began, the Sugar Beet Pavilion at Sugar House Park was buzzing with activity: face painting, balloon animals, food, a raffle and more. 

Nearly every participant wore T-shirts reading “End NF” or “I know a fighter.”

This walk is the main fundraising event for the CTF, Evans said, but what makes the event special is that it creates a community for those living with the disorder. 

Kids like Rylie rarely get the chance to make friends, spending most of their lives in and out of the hospital.

“They go to the doctor a lot,” Evans said. “They get a lot of MRIs. There are a lot of unknowns. [The walk] allows them to find a community and forget about all those things.”

The .8-mile walk at Sugar House Park was specifically chosen because of its accessibility, easy terrain and a course that would be inclusive to everyone who participated. 

“I would just encourage everyone to participate,” Evans said. “Whether you’re affected or not, reach out and help those in need.”