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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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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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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To get a sight-saving treatment or therapy to the commercial market in the United States, you need three basic things: 1) scientists to discover and develop it; 2) money to support the research; and 3) Food and Drug Administration (FDA) marketing approval. While it may not seem obvious, the FDA ultimately drives everything — the researchers and the money. That’s because without FDA approval, you have no treatment, even if you have great research and adequate funding.

Photograph by Andy Manis.
When I joined the University of Wisconsin (UW) in 2003, I saw stem cell research as having great potential to benefit patients with retinal degenerations. I also saw stem cells as a way to answer basic science questions about the retina and the conditions that affect it. As a scientist and a pediatric ophthalmologist, these goals were really important to me.
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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. 