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Archive for the FFB on the Road Category

Your Gene is Their Business

Dr. Stephen Daiger (standing, left) and Dr. Rose speak with a Foundation member after the session. 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?”

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Adventures in Mountain-Climbing and Research

Adventures in Mount-Climbing and ResearchBeing 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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Why “Bad Days” Are Normal

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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Overcoming the Challenge of Getting Vision-Saving Treatments to the Retina

McGinnisThe 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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Turning Suffering Into Hope

Paul KarosPaul 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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Which Research Projects Will Make the Cut?

Dr. Eric Pierce, chairman of the SAB, and Amy Laster, FFB's grants and awards program managerWhen 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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Getting Personal at VISIONS 2012

Video Included:
John Corneille at VISIONS 2012
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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The Importance of Blind-Sensitivity Training

Video Included:
Hyatt Staff experiences sensitivity training
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.

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Heading to Minneapolis for FFB’s Annual VISIONS Conference

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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Optogenetics Workshop Sheds Light on Opportunities for Restoring Vision

Dr. Richard Masland, Massachusetts Eye and Ear Infirmary

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.

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