Minibike riders raising funds for genetic disease

DOTHAN, Ala. - Kevin Bean’re’s minibike had a blow out and spilled him into a ditch Monday, but he is undeterred from his quest to set a Guinness World Record and raise funds to promote awareness of a rare genetic disorder.

Bean’re and Tim Ford are traveling across the country from Daytona Beach, Florida to San Diego, California in 21 days on minibikes, miniature motorcycles with small engines commonly ridden by children.

The two men are holding fundraisers for a charity named for Aiden Jack Seeger, the child of a friend of Bean’re’s who died from adrenoleukodystrophy.

Adrenoleukodystrophy, or ALD, is a genetic disease that typically affects boys and men. It destroys myelin, the protective sheath that surrounds the brain’s neurons — the nerve cells that allow us to think and to control our muscles.

Bean’re said that with early detection, the disease can be arrested with treatment. Bean’re said he hopes to help raise awareness and encourage parents to have their children tested soon after birth for the genes carrying the disease.

The film Lorenzo’s Oil details the development of a treatment for the disease, which affects about 1 in 18,000 people.

Ford said he is grateful for the opportunity to raise money for ALD awareness, and to see the country on a minibike.

Ford said traveling on a minibike does pose some challenges.

“It’s a whole different ballgame with a minibike,” he said. “You’re less visible in traffic and people don’t get over for you. It’s only 25 mph, but things can go bad really quick.”

Bean’re said his spill Monday morning was hair-raising, but that traveling on a minibikeis a unique experience.

“When you’re on a minibike, you’re 12 again,” he said. “You’re not worried about your job, your 401k, retirement or family problems.”

Bean’re previously set a Guinness World Record in 2014 for longest distance traveled on a pocket minibike, going 1,407.6 miles from Louisville, Kentucky, to a motorcycle rally in Sturgis, South Dakota.