Most everyone with an inherited retinal degenerative condition eventually asks the questions, “How do I find out what gene is causing my disease, and how can that information help me today?”
Archive for the FFB on the Road Category
Being a blind person who climbs mountains – that’s like being a Jamaican bobsledder; the two just don’t seem to go together, Erik Weihenmayer acknowledges. But, in fact, the opposite is true.
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I mentioned, in my first post, that I’ve attended a number of VISIONS conferences. And yesterday, like most of my experiences in years past, was a roller coaster of emotions. There was the usual anxiety of just maneuvering around and through crowds, the exasperation from not being able to see the faces of the people I was talking to, much laughter and even a few tears.
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The diameter of the human eye is only about an inch, but for people with retinal degenerations, it can seem like a million miles.
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Paul Karos, a renowned airline-industry analyst and financial executive, spoke very movingly about his life and career at today’s welcome luncheon at VISIONS 2012 in Minneapolis. Diagnosed with retinitis pigmentosa at the age of 8, he struggled, at first, with the realization that he’d eventually lose his vision. But then he came across two influential people, including Gordon Gund, FFB’s co-founder and chairman, who helped him realize that he could achieve great things.
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When the VISIONS 2012 conference began yesterday, the Foundation’s Science Department’s intensive work had already begun. On Wednesday afternoon, we put 15 members of our Scientific Advisory Board (SAB) in a meeting room at the hotel under lock and key. For the next 24 hours, we gave them only bread and water, forbidding access to friends and loved ones, and, perhaps most Draconian, we cut off their wi-fi access.
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Video Included:
I work for FFB, as its director of gift planning, but I also actually have a retinal disease – something called retinitis pigmentosa, or RP. Although I was diagnosed at age 5, I didn’t discover I had RP till I was 18, partly because my parents didn’t want the disease to hold me back in any way.
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Video Included:
In preparation for the arrival of VISIONS 2012 attendees, we did what we usually do the day prior – provided hotel staff, everyone from housekeepers to food servers to managers, with blind-sensitivity training.
Every year, in late June, the Foundation Fighting Blindness hosts an annual conference we call – for, perhaps, obvious reasons – VISIONS. It’s a four-day event during which FFB members, staff, board members, trustees and retinal experts gather under one roof to focus on those things we do best.
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Dr. Richard Masland, Massachusetts Eye and Ear Infirmary
Last Friday, the Foundation hosted an outstanding science workshop in Boston on the development of optogenetic therapies for restoring vision in people with advanced retinal diseases. We convened an impressive cadre of the world’s top retinal scientists — including experts from Japan, France, Italy and the United States, as well as local researchers from Harvard and MIT — to discuss available optogenetic technologies and advancing them into and through clinical trials.
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. 