Annual Kickin’ it in the Park for Neurofibromatosis

CHIPPEWA FALLS, Wis. (WEAU) -An annual walk in Chippewa Falls is working to raise awareness of Neurofibromatosis, a rare genetic disorder. NF affects about one in every 3,000 and currently has no cure.

“That causes tumors or fibromas to grow on the nerves within or on the body and over the years,” Cynthia Valentino said.

Valentino’s sister Myshell had NF and passed away from it in 2016 at the age of 17.

In honor of Myshell, Valentino and her family started the non-profit Neurofibromatosis First, or NF First, and the annual Kickin’ it in the Park for NF which is held in Irvine Park.

“It was her dream to start a nonprofit that all the funds raised went towards research and awareness instead if salaries,” Valentino said. “We’re here for each other. So if they have questions or they’re new to a diagnosis of N-F, they can ask any of us and feel comfortable.”

Jenniffer Slowiak has been a volunteer with the event since the beginning.

“They were neighbors when we were young, and I just feel that supporting them at the walk and being able to be here for them is a great opportunity,” Slowiak said.

So has Val Kulesa.

“I’ve known them for years, ever since they were little babies. And yeah, this NF is a disease that a lot of people don’t know about or don’t realize what it is,” Kulesa said. “It’s a great cause.”

Slowiak says an event like this shows people in the community who are affected by NF that they aren’t alone.

“Just getting more people involved it seems like there’s always different people that come every year,” Slowiak said. “And seeing new faces is good because they help spread the word as well.

Each year, Valentino says familiar faces and new ones attend the event.

“Our whole point of the walk is to make sure that families that find out that their child has been diagnosed don’t go through it alone like we thought we did with my little sister for a long time,” Valentino said.

Valentino says she doesn’t want other families to feel alone because there are people who understand and care.

“Just being there for everybody’s family, they have a support team that’s great,” Valentino said.

Valentino Kickin’ it in the Park typically raises a few thousand dollars every year. She says they try to donate the money locally to families dealing with NF or to places like the University of Minnesota for research.

To learn more about the non-profit, click here.

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