With a Prophet for a Friend, Fraternity Roommates Pedal for a C.U.R.E.

Mark and Jeremy are tandem buddies.

It was the long Thanksgiving 2008 holiday weekend. Both Jeremy Poincenot of Carlsbad, Calif. and Mark Prophet of La Verne, Sigma Phil Epsilon fraternity brothers and roommates at San Diego State, were headed home.

Mark was eager to reconnect with family, see old friends, catch some football and TV and just enjoy some downtime. Meanwhile, Jeremy’s mother had scheduled him an eye exam after he complained that his vision had lately been bothering him. He’d wake up and notice things seemed blurry.

“No big deal,” he figured. “It must be how tired I was” from staying out late and cramming too many activities into too few hours – the typical life of a college student enjoying the freedom of living away from home.

At the optometrist, he figured the biggest issue facing him was trying to decide between glasses and contacts. When his first eye was covered and he was asked to read the chart, Jeremy aced it, just like a pop quiz. When the doctor covered his other eye, however, he couldn’t see the chart at all.

After the Thanksgiving weekend, Mark returned to campus, but Jeremy was a no-show. Concerned, Mark called his roomie. “What’s up, dude?”

Mark wasn’t prepared for what he heard.

After failing his eye test, Mark began undergoing a battery of tests, including an MRI to rule out a brain tumor. Finally, one diagnosis pointed to optic neuritis, a condition that could be successfully treated with steroids. But instead of improving, his vision got worse, so he underwent more tests.

In another test, monitoring his brain, he heard his technician mutter, “I’ve never seen anything like this before.”

And chances are he hadn’t. His new diagnosis was Leber’s Hereditary Optic Neuropathy (LHON), a rare hereditary genetic disorder that causes permanent blindness. Affecting about only 100 Americans a year, the disease has no treatment or cure.

Adjusting to LHON

“You’re not completely blind – you still have peripheral vision – but you can’t drive, read without significant magnification, or see friends,” Jeremy said, describing some of the effects and challenges of his condition. “Friends say ‘hello,’ but you don’t know who they are – it’s awkward and frustrating.

“You don’t ‘look blind,’ but there’s so much you can’t see.”

After being one of the boys his whole life, suddenly Jeremy felt like he no longer fit in. A million unanswered questions raced through his head. “Will I be able to attend classes?” “Will I ever find a job?” “Will I ever play sports again?” “Will I need a cane or a guide dog?”

Although there is scarce information on LEHON – a Google search turns up few references – Jeremy and his family learned that he has the 11778 mutation, meaning he has a 4% chance of a spontaneous recovery. They also learned that Jeremy’s mother, without even knowing it, was a carrier of the gene meaning she could transfer it to 100% of her other children. In other words, Jeremy’s sister and brother could also suddenly go blind. And if you’re a woman, all your future children risk losing their vision, as well as your sisters’ and female cousins’ children.

Mark, far left, and Jeremy hoist their tandem bike that will take them from Santa Barbara to San Diego over four days beginning Aug. 26.

It was as if the whole family woke up one morning to find themselves living with a ticking time bomb.

Out of this gloomy forecast, however, they were able to discern a few rays of light. Dr. Alfredo Sadun of the Doheny Eye Institute at USC and winner of the Lighthouse International Pisart Award given to one vision scientist deemed to have made the greatest international contribution against blindness, led an annual project to study a large extended LHON family in the rural part of Brazil. As a result, the project has literally rewritten the textbooks on LHON, creating hope for those affected and their families.

Jeremy also hasn’t taken his dire diagnosis sitting down. He and Mark started discussing ways to create awareness about LHON and raise funds for Dr. Sadun and others’ ongoing research on LHON and related eye disorders.

They and some friends clicked on the idea of a bicycle ride from Santa Barbara to San Diego. To test out the idea, Mark and Jeremy straddled a tandem bike, with Mark in the lead and Jeremy in the back. After a wobbly start, practicing their take-offs and stops, they were convinced their goal was achievable. Late last July, they completed the 230-mile trek.

This year, instead of four cyclists, the CURE (Cycling Under Reduced Eyesight) team will comprise 13 riders and a couple of chase cars to carry their extra gear and luggage.

“I call them my ‘seeing eye brothers,’” Jeremy said.

Once again, Mark will serve as captain. They will set out on Aug. 26 and pedal for four days, cruising the coastline and stopping over night to stay with friends or at hotels, and telling all in their path about LHON.

“When LHON took away my vision, I feared that it would take control of my life,” Jeremy said. “But I’ve decided not to let that happen – instead, I’ve chosen to take control of LHON. “

To show support for Jeremy, Mark and the CURE team on their 2010 ride, you can donate online at www.lhon.org/cure. Or you can send a check made out to Poince Inc/LHON research. If you prefer to donate directly to a registered 501(c)3 charitable organization, make your check out to Doheny Eye Institutute/LHON research. All checks should be mailed to: Poince Inc. 7722 Rocio Street, Carlsbad, CA 92009.

To learn more about LHON or the CURE 2010 ride, you contact Jeremy at LHONpoince@aol.com.

A journey of 230 miles begins with a single pedal.

Jeremy, second from left, with his family.