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Archive for the Retinitis pigmentosa Category

VISIONS 2015 – Dr. José Sahel Receives Foundation’s Most Prestigious Research Honor

Dr. SahelI’ve known Dr. José Sahel for more than a decade, and every time I’m with him, I’m impressed by his humility and graciousness. He’s not much for rhetoric or small talk, but is always polite and insightful. Dr. Sahel is also very soft-spoken, but I think that’s his secret weapon. He forces you to really listen to what he’s saying.
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VISIONS 2015, Faces of VISIONS – Amy and Nathan Hayes

Amy and Nathan HayesOne of the wonderful things about the Foundation’s annual conference—taking place this year in FFB’s founding city of Baltimore—is it draws all kinds of people from around the world. And while they’ve come to gather research information and hear motivational speakers and meet others like themselves, each has his or her own story to tell.
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Sun and Funds: FFB’s Annual Summer Campaign

Summer Challenge web pageWe all know that Memorial Day is not, technically, the first day of summer. But seeing as we like to stretch summer out as much as possible, it only makes sense to kick it off… well… a few weeks early. The same premise is behind FFB’s Summer Challenge to End Blindness campaign, which began Memorial Day weekend and continues through the upcoming season.
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ARVO 2015 Highlight: The National Eye Institute Invests $4 Million in Audacious-Goals Research

future of retinal researchThe National Eye Institute’s (NEI) establishment of its Audacious Goals in 2013 was a watershed moment in the drive to cure blinding retinal diseases. The mission of the program—to regenerate the neurons and neural connections in the eye and visual system—is synonymous with the Foundation’s mission to eradicate retinal diseases. Most important, it means that the NEI is making significant investments in research that will benefit people with retinal conditions, such as retinitis pigmentosa, Usher syndrome, Stargardt disease, and age-related macular degeneration.
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ARVO 2015 Highlight: New Research Boosts Prospects for Saving Vision with RdCVF

Dr. SahelAn eye doctor could preserve meaningful vision in people with advanced retinitis pigmentosa (RP) by saving just five percent of their cones, the cells concentrated in the central retina enabling us to read, recognize colors and see in lighted conditions.
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ARVO 2015 Highlight: A Cut-and-Paste Approach to Fixing Retinal-Disease Genes

gene editingI just returned from the annual meeting of the Association for Research in Vision and Ophthalmology (ARVO), the world’s largest eye-research conference, held this year in Denver. It attracted more than 11,000 scientists and physicians, including many of the 187 retinal researchers funded by the Foundation. The FFB science team and I worked feverishly to learn as much as possible about the latest news from the retinal-research front. It was truly exhilarating—albeit, at times, overwhelming.
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A (Fundraising) Bicycle Built for Two

TThomas and Joewo men on a tandem bike, one of them blind, is not something you see every day. And that’s the point. “Here’s an old guy and a blind guy riding across the country. What can you do?”

That’s Joe Shearer, a retired, and sighted, United States Air Force veteran who, along with Thomas Hyatt, who has retinitis pigmentosa, set out today on a 4,100-mile trek from Oregon to Virginia. Their goal is to raise awareness and funds for three nonprofit groups, including the Foundation Fighting Blindness, before they finish up in late August.
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Up in the Air – Almost Getting Stranded at the Airport

Airplane flying out of O'HareBecause of vision loss caused by retinitis pigmentosa, I’m almost completely blind. That does not, however, stop me from traveling alone. I do have one fear, however—being stranded at the airport. It was only recently that it became a real possibility.
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Need-to-Know Information about Clinical Trials

clinical trial patientWith about 15 clinical trials underway for inherited retinal diseases, and several more poised to begin in a few years, patients are eager to sign up for access to potential vision-saving therapies.
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A Renaissance Man with Vision

Louis PosenLouis Posen is one of the coolest guys on the planet. He’s president and CEO of Hopeless Records, a company he founded at the age of 21—despite the fact that he was losing eyesight to retinitis pigmentosa (RP). The 43-year-old is also a National Trustee of the Foundation Fighting Blindness. And he got into the music business by accident.

In high school, he was a punk-rock aficionado, buying records and going to every local concert he could. In film school, he came to appreciate the positive influence art, including music videos, had on people’s lives. But this was a time when many punk groups couldn’t afford to produce the high-quality videos to which many viewers were accustomed.
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