Jeremy Poincenot is Riding for a C.U.R.E.
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About 100 people in the United States lose central vision due to Leber’s Hereditary Optic Neuropathy each year, joining the 4,000 or so Americans who are already vision impaired due to LHON. Thousands more carry a LHON genetic mutation, and they could suddenly lose their vision at any time. It’s estimated that about 35,000 people worldwide have LHON vision. The most common situation is for LHON vision to affect young men, but it also affects men and women of all ages.
Jeremy Poincenot was 19 years old when he went legally blind due to Leber’s Hereditary Optic Neuropathy (LHON), becoming one of just 100 Americans diagnosed with the disease each year. Though LHON had plagued his family for generations, he was the first one to lose his sight. In fear of the rest of his family losing their sight as well, Poincenot set out to raise money for research for a cure or treatment of the disease.
“It’s never been about getting my sight back,” said Poincenot. “It’s always been about making sure my family doesn’t lose theirs.”
Taking action, Poincenot created the C.U.R.E. (Cycling Under Reduced Eyesight) ride, a three-day tandem 185-mile bike ride in late July 2009 from Santa Barbara to his hometown of Carlsbad, CA. With seven participants in total, the ride raised $3,000 donated to the Doheny Eye Institute. In 2010, the ride saw 14 participants raise $20,000, and in 2011 it grew even more with $27,500 raised. In three years, Poincenot and his friends have raised more than $50,000 for LHON.
Poincenot focuses his fundraising efforts on the Doheny Eye Institute primarily for his doctor, Dr. Alfredo Sadun. Sadun and other doctors at the Institute make an annual trip to the Brazil each year where there is an extended family of 300-plus people who either carry or are affected by LHON in some way. The doctors perform tests on this group as a means of research for the treatment and potential cure of LHON.
“Our goal for 2011 was to make the ride more of a service learning project. We wanted riders to be able to answer questions about why they were riding and in turn spread awareness of our cause,” said Poincenot. Participants were taken to Dr. Sadun, where he informed them about LHON so they could then take that information and pass it on to C.U.R.E. ride observers.
Now a 5th year senior at San Diego State University, Poincenot focuses his efforts on spreading awareness of his disease. He has been featured on MTV’s True Life: I’m Losing My Sight, was the youngest person to receive San Diego’s Challenged Athlete of the Year Award for 2011 and also participants competitively as a blind golfer.
“Everything I do, the PR, awards, MTV…it’s not about boosting my ego. The coolest part for me is that it comes full circle to raise awareness for LHON,” said Poincenot.
More About This Charity
Region
West
Category
Most Influential College Student or College Organization
Name
UMDF LHON Project Fund
Mission
To build a community of awareness and support for those suffering from LHON while also raising funds for treatment and a cure.
Impact
- Has raised more than $50,000 for LHON since inception
- Raised $25,000 since Jan. 1, 2011
- Biked 185 miles in 4 days in 2011
Works In
San Diego, California
Learn More
Who’s Involved
