Red Nose River Float fundraiser returns to Ronceverte

By Stephen Baldwin, RealWV

Chally Erb was a beloved resident of Lewisburg who died in 2019 following a four-year battle with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. 

His daughter, Deva, and his good friend, Dan Withrow, planned a fundraiser for ALS research after Chally was diagnosed. It was a golf tournament scheduled for June 2016. 

“Then the flood happened,” remembers Deva. “We didn’t do the event so we could help with flood recovery.” 

Chally Erb spent four years diagnosed with ALS, and he utilized much of that time raising awareness about the disease and advocating for more research and treatment options with policymakers and the medical community.

As Chally’s condition worsened, family and friends focused their energies on caring for him up until his death in 2019. Then the pandemic hit. So in 2022, after Dan lost another friend to ALS, Gary Arbaugh, he and Deva decided it was time to focus on raising awareness in the larger community. 

“The idea was a float down the river,” says Deva.” We only had two months to pull it off. But thanks to the community’s support, we managed to raise $25,000 that first year. Dan and I didn’t do it; the community did.” 

“It’s a silent disease,” Deva says. “You get the same diagnosis today as you did 100 years ago. There’s no real treatment or cure. 

The goal of the ALS Association is to make it a liveable disease by 2030. They rely on fundraisers like the Red Nose River Float to fund research. They served 224 people living with the disease in West Virginia last year at three clinics, including 23 veterans like Chally.

“Chally was a lot of things,” Deva says. “He was a professional clown. If you ever saw him, he usually had a red nose on at fairs and festivals. The name for the float came from him. He was the inspiration. Everyone who floats get a red nose.”

Organizers Dan Withrow and Deva Wagner are in year three of the Red Nose River Float, which is one of the state’s largest ALS fundraisers. They hope to raise even more this year to fund additional research.

This year’s event will be held on Saturday, June 1. Participants will float from Caldwell to Ronceverte with an afterparty at The Sportsman Tavern featuring food trucks, games, and speeches from participants and those working to overcome the disease. 

In addition, there will be a kickoff party, also at The Sportsman Tavern, on May 31 from 5-9pm.  Local band Deep State will provide live music.  

If you’d like to signup, visit here. The registration fee, which goes entirely to the ALS Association, is $35. Everyone who registers gets a red nose and a t-shirt.

“My dad always said everything happens for a reason, but you don’t always know what is,” Deva reflects. “I think part of the reason might be raising money for this disease. May is ALS awareness month. It’s a good time to be aware of people who are suffering with it.”

For more information on the Red Nose River Float, follow them on Facebook.

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