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Archive for the VISIONS Category

Colorado, VISIONS 2014 — See You There!

Colorado skylineIf you were someone affected by a retinal disease, and looking for the perfect event, one which combines the latest research updates with networking opportunities and support sessions, it would look exactly like the one FFB is hosting in Colorado June 19-22  — VISIONS 2014. Roughly 500 Foundation members, associates and researchers will gather at the annual conference, which will also be covered via this blog and social media, for those who can and can’t make it.
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New Brand, Same Mission

Video Included:
Tom BernardinNow that VISIONS 2012 is over, we’re sharing with the world what attendees witnessed at the conference’s awards dinner Saturday night – an unveiling of FFB’s new logo:
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Putting Myself to the Test

John Corneille at VISIONS 2012Yesterday, my last full day at VISIONS 2012, started off in what may seem an odd way, in that I prevented the hotel maid service from doing its job. I did so by hanging the “Do Not Disturb” tag outside my door, a trick I learned a couple years ago, not long after I began venturing out on trips like this on my own.
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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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