HERMOSA BEACH (CBSLA.com) — He's legally blind and has an eye disease so rare only about 100 people get it every year.
There is no treatment or cure for Leber's Hereditary Optic Neuropathy, or LHON. But there is also no holding back Jeremy Poincenot who is taking part in an annual bike ride up the Southern California coast over Labor Day weekend.
Poincenot started losing his vision when he was 19 years old in 2008 as a college student at San Diego State University.
"It was a depressing time, it was tough to understand," he said.
He became diagnosed with LHON about two months later.
"My vision is comparable to a doughnut — I have the top, the sides and the bottom. I'm missing what the doughnut is missing."
Mark Prophet, Poincenot's college roommate, saw the effect LHON had on his friend's life and wanted to do something about it.
"I just wanted to get my friend back on track enjoying life, loving life the way that he was before," Prophet said.
In 2009, they created the Cycling Under Reduced Eyesight (C.U.R.E.) Ride as a way to lift Poincenot's spirits and raise awareness and funds for LHON.
The 200-mile bike ride from Santa Barbara to San Diego has raised more than $125,000 over the past five years.
"I'm on the back of a tandem riding a bike, and if people find that inspirational, I think that's awesome and that keeps me going," Poincenot said. His goal is to raise $1 million.
"My goal is the hope that they find some type of treatment so carriers of this disorder don't have to live in fear of going blind like I did," he said.
On Sunday, about 25 men will arrive in San Diego to complete their 6th annual ride. Poincenot, leading the group, will be on a tandem with Prophet in front.
"It's a tough race," Prophet quipped, "Especially when you're the only one pedaling, when you're not getting any help from the person on the back."
Poincenot has also not allowed LHON to stop him from playing his favorite sport — golf. With the help of a guide, he won the World Blind Golf Championship in 2010, beating out 60 competitors from 14 different countries and holds the title of the U.S. National B-2 Blind Golf Champion. He uses his experience to drive his inspirational and motivational speaking.
To donate and find out more details on the C.U.R.E. Ride, click here.
For more information about Poincenot, click here.
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