I am excited to be reporting to you live from Seattle where about 10,000 of the world’s top eye researchers are convening for the annual meeting of the Association for Research in Vision and Ophthalmology (ARVO). While researchers from many different ophthalmic fields are present at ARVO, it is the world’s largest gathering of retinal scientists. Continue Reading…
Dr. Robert Langer’s medical technologies may someday reach 2.5 billion people, including those with retinal diseases. That’s according to venture capitalist Terry McGuire, who introduced him as a featured speaker at the Symposium on Retinal Innovation recently hosted in Boston by the Foundation Fighting Blindness. The event brought together investors and retinal scientists to discuss potential collaborations and partnerships for advancing retinal-disease treatments.
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Three weeks ago, FFB kicked off its Front Lines Fan (FLF) campaign, in part to celebrate those who are on the front lines of fighting blindness. They include researchers, chapter leaders, those walking and racing for a cure, fundraisers, parents and, of course, people affected by retinal diseases. We also wanted to provide an opportunity for those who help us any way they can to be recognized. You can enter our FLF contest by either nominating yourself or someone you consider a deserving FLF.
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Retinal diseases may be incurable, at the moment, but, with the help of specialized training and technology, they are not unmanageable. In fact, a savvy patient working with a conscientious eye doctor can adjust relatively well to the various stages of vision loss — via, for instance, mobility or assistive-technology training. And in the case of wet age-related macular degeneration, or AMD, there are treatments that slow vision loss.
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A Foundation-funded research team at the University of Pennsylvania — in collaboration with scientists from Michigan State University, the University of Florida and the University of Miami — has found a remarkable way to restore function to fledgling cones, the retinal cells most critical to our daily lives. Drs. András Komáromy and Gutavo Aguirre injected a high dose of a protein called ciliary neurotrophic factor (CNTF) into the eyes of older dogs with achromatopsia, a retinal disease that causes day blindness from cone dysfunction and degeneration. What happened next is extraordinary.
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When I was 15, I was diagnosed with Usher syndrome, the leading cause of deaf-blindness in the United States. Although I’d had hearing aids since kindergarten, and could never see in dark places, it wasn’t until I started to trip over things in broad daylight that my parents became truly concerned.
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There’s no denying that collaboration is key to every aspect of the Foundation’s work – whether it’s researchers sharing their findings among peers to advance treatments, volunteers banding together to fundraise for events or venture capitalists investing in start-up companies developing vision-saving treatments. And my new role, as board secretary for the National Alliance for Eye and Vision Research, or NAEVR, is no exception.
Here in the Communications department at FFB’s HQ, we do all we can to help our science and fundraising teams do their jobs. And in Foundation offices nationwide, our staff does all it can to help those on the front lines – those either affected by a retinal disease or supporting someone who is – do all they can to raise awareness and funds.
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I’ve been conducting or overseeing scientific research for more than 40 years (yikes!), but I continue to be humbled by its nuances, complexities and ambiguities. Sometimes, just when you think you have something figured out, you find evidence to the contrary. Sometimes, as Vladimir Lenin said, progress is made by taking “one step back, two steps forward.”
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My ophthalmologist’s voice was firm and direct. “You’re going blind.” Tough words for a 5-year-old to digest.
Years later — despite efforts to cure my retinal disease, first as a graduate student, then as a postdoctoral researcher focused on ocular pathology — I came to accept the truth that those words carried. I was slowly being forced to adapt to a world not designed for me, or for any visually impaired person. But the progressive nature of my disease, retinitis pigmentosa, meant that time was on my side. I had time to change how I do things, how I communicate, how I think.
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Steve is highly respected for his expertise and tireless commitment to finding treatments and cures for vision-robbing retinal diseases. 
As the Foundation's senior science writer, Ben writes science and research articles for the Foundation’s website, newsletters and Eye on the Cure blog. 
As the Foundation's senior writer, Rich writes and edits content for all of the Foundation’s print and online publications, including its blog, Eye on the Cure. 