Rocking & rolling for a great cause

WHAT: AsherBash
WHEN: 2 p.m. July 17
WHERE: Knucklehead Saloon, 2012 Cleveland Road West, Huron
COST: $10
INFO: 419-433-6944

Asher Nikolajevs, 13, may be suffering from Batten Disease (Neuronal Ceroid Lipofuscinosis), but his family is focused on making sure his struggle with the eventually fatal ailment is not in vain by hosting their annual fundraiser. This year marks the fifth AsherBash event, which takes place July 17 at Knucklehead Saloon in Huron.

“This is where we raise money for research for (the) Batten Disease Support and Research Association,” said Nikolajevs’s mother, Leisa Nikolajevs. “It’s an international organization that, thankfully for us, is pretty local, located in Reynoldsburg, Ohio near Columbus. Batten Disease is pretty rare and it doesn’t get a lot of government funding. So as parents, we feel obligated to do whatever we can for research, and this is our event to do that.” 

 The all-day affair is centered around live music by acts Tuesday Waits, Dan Fester, Bootless Joe, Paper St. Soap Co., The Sloppy Joe Band and Eddie Brunswick & the Hot Rod Lincolns. The festivities begin in the morning with the “Grapes & Gears Winery Tour,” a motorcycle and classic car run that travels to four North Coast wineries. Speaking of bikes, a name will be drawn at AsherBash for the Rolling Bike Night series. 

There’s also food and raffles (including Harley-Davidson items, golf packages, winery gift cards, Cleveland Indians tickets and a Kelleys Island package) throughout the event.

 For Leisa, her husband Vic and 15-year-old autistic son Sam, the past few years have been rough watching the decline of Nikolajevs, who attends Berlin-Milan Schools. Nikolajevs now experiences seizures, mental decline and loss of motor skills. Batten Disease is relatively rare, occurring in an estimated 2 to 4 of every 100,000 births in the United States. 

 “This disease is absolutely devastating to our family,” Leisa said. “First it was his vision, then seizures and mental decline, physical decline. You are watching your child slowly die. It’s like somebody is stabbing me in the gut every day just to watch him suffer like this. It’s torture.” 

Nikolajevs said she hopes the North Coast will turn out once again to support the AsherBash cause. 

“We’re hoping we can find a cure and help the next family that is diagnosed with this,” Nikolajevs said. “We know our chances are slim, but for those in the future, we have to do it.”

 Tickets for “Grapes & Gears Winery Tour,” which begins at 10 a.m. July 17 from Knucklehead Saloon, 2012 Cleveland Rd., Huron, are $20 for riders, $5 for passengers. Admission to AsherBash is $10. The event takes place from 2-10 p.m. July 17 at Knucklehead Saloon. For more information, call 419-433-6944.

Check out photos from last year's AsherBash.