To keep tabs on Glenn Fenster’s cross-country ride for epilepsy awareness, visit www.destinymaker.org.
Eight years ago, Florida resident Glenn Fenster had a moment to remember.
He was playing tennis with his son, Nyle Fenster, who was nine years old at the time. Suddenly, Nyle had a seizure and fell to the ground.
The elder Fenster ran over and offered his son a hand. Nyle refused help and rose to his feet on his own.
Fenster clearly remembers the exchange that followed.
“I said, ‘How do you keep getting up?’” recalled Fenster. “And, as he’s getting up, he said, ‘Dad, I’ve never seen you stay down.’
“It was the most unbelievable moment.”
At age 2, Nyle was diagnosed with idiopathic epilepsy. On that day on the tennis court, his father decided to do something about it. He formed an organization called Destiny Maker to raise awareness.
And, for the past six years, Fenster has taken his message on the road during annual transcontinental bike rides.
On Tuesday, the lean and sunburned Fenster pedaled into Craig. For his efforts, he received a free meal and night’s stay at Fiesta Jalisco and Elk Run Inn, respectively.
Fenster left his home in Aventura, Fla., on April 10, then traveled north to Pennsylvania. Next, Fenster turned West.
From Craig, he plans to travel to Salt Lake City, north through Yellowstone, Canada and Alaska, then south to end his trip in Venice Beach, Calif., in mid-July.
Since April, Fenster has pedaled an estimated 10,000 miles. He estimates he will log 30,000 miles when he reaches Venice Beach.
Along the way, he said he talks to whomever he can about epilepsy.
“I speak to everyone I get a chance to,” he said. “At a red light, I’ll ask the person next to me to roll down their window. Or, it could be a waitress at the local café or a convenience store clerk.
“I’m raising awareness one person, one mile at a time.”
Fenster said many people with epilepsy live normal lives, but seizures can put them into harm’s way. For that reason, people with epilepsy need increased supervision.
“It’s one thing to pass away from a prolonged seizure — that’s a terrible, terrible thing — but it’s another thing to lose a child’s life because they don’t watch closely enough,” he said.
Fenster said he receives sponsorships and donations for his rides.
“So far, I’ve been sponsored close to $6,000 since the trip started, and about $2,800 in cash,” he said. “And, without sponsorship from locals in the towns I arrive in, it would be impossible.”
Randy Looper, owner of the Elk Run Inn, said his business received a call.
“We had someone call Tuesday morning,” Looper said. “Basically, they went over what he’d been doing for epilepsy, and it worked out that we could donate a room.”
Looper said he didn’t have the opportunity to meet Fenster, but his awareness of epilepsy was raised through reading Fenster’s website, www.destinymaker.org.
Fenster said epilepsy affects 50 million people worldwide.
“Epilespy is quite a misunderstood condition,” he said. “Three million Americans have epilepsy. Fifty-thousand a year are dying from it.”
Apart from driving restrictions, Fenster said epileptics lead relatively normal lives. But, that doesn’t mean he can sit on his laurels.
“When the public’s eye feels that everyone is living well with this condition, less money is being given for research,” he said. “This is why I’ve been doing these rides for six years now.”
Fenster concedes that his awareness rides keep him away from the child who inspired them. Nyle, he said, lives with his mother.
“One of the great things about my son is although he has epilepsy, he’s just like any other teenager,” Fenster said.
“He’ll barely say more than one word to his dad when I call,” he said, laughing.
Fenster also acknowledges that people might think he’s strange for bicycling all over the country every summer.
“I understand I’m different,” he said. “But, I’m here to make a difference.”
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