Doheny patient raises awareness, funds for rare eye condition

Friday, October 02, 2009:

By Leslie Ridgeway
USC Health Sciences Public Relations and Marketing

After suffering the effects of a rare condition that robs victims of the center of their vision, 19-year-old Jeremy Poincenot decided the best way to deal with his situation was to hop on a bike.

Poincenot, a patient of Alfredo Sadun, professor of ophthalmology at Doheny Eye Institute, arranged a three-day tandem 185-mile bike ride in late July from Santa Barbara to his hometown of Carlsbad, CA. The ride brought attention to his condition—Leber’s hereditary optic neuropathy (LHON), which earlier this year left him legally blind. “We raised almost $3,000,” said Poincenot. “Four of my friends stepped up to help me, and two people came with us to make a documentary. It was amazing, and was the highlight of my summer.”

Poincenot’s contribution supports research conducted by Sadun in rural Brazil, where he is working with a family group who all share LHON. The condition has an incidence of one in 50,000 people. Poincenot and his mother, Lissa, also spoke to the Luminaires, a philanthropic group that supports Doheny, about his experience.

LHON makes it impossible for Poincenot to drive, recognize faces and read without assisting technology. It is often misdiagnosed; Poincenot said that doctors initially thought he might have a brain tumor.

In addition to raising awareness of LHON with a Web site (http://web.mac.com/poince/cure/Home.html), Poincenot is continuing his studies at San Diego State University and meets with Sadun every six to eight weeks.

“He said he has seen signs of improvement,” Poincenot said. “Dr. Sadun gives me hope.”

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