I’m a lifelong traveler who has retinitis pigmentosa, or RP, and I also run Mind’s Eye Travel, a travel agency for the visually impaired. In fact, I will be exhibiting at the Foundation’s annual conference, VISIONS 2013, this summer. So, if you’re affected by a retinal disease, I’d like to share several useful travel tips. And for those of you not affected, you may find at least a few of them useful as well.
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Archive for the Guest Bloggers Category
The Argus II Retinal Prosthesis System was recently granted market approval by the U.S. Food and Drug Administration (FDA), which marks a significant milestone in the development of a therapy that has spanned more than 20 years. It was at Johns Hopkins University, in the early 1990s, that I, along with Drs. de Juan, Humayun and Dagnelie, with some early support from FFB, carried out the very first short-term (one hour or so) experiments with human volunteers. We demonstrated that electrical stimulation of the retina could, indeed, produce spots of light perceived by blind patients.
Escaping a World Trade Center tower on Sept. 11, 2001, certainly wasn’t easy, but sometimes it seems to pale in comparison to influencing the way many view those of us who are blind. I say this because my Ground Zero ordeal — which I’ve shared in my book, Thunder Dog, and will cover in my session at the Foundation’s VISIONS 2013 conference in June — took place in just one day. Whereas changing attitudes has been a lifelong vocation.
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Although a disease called cone-rod dystrophy has rendered me legally blind, I’m known, in certain circles, as a world-class triathlete. I swim as well as bike and run (often on mountain trails). I began competing before my vision deteriorated, and I’ve since learned to use my other senses. In fact, I like to think of my feet as my eyes. I take an awful lot of steps, and I don’t land heavily. If I’m on a trail and step on something that doesn’t feel right, I hop off, then move quickly forward. It’s usually on the run where I beat my competition.
But you know what? I can no longer shop for groceries.
With the elections now behind us, the U.S. Congress needs to address an issue that could delay by years, perhaps even decades, the ability of those with serious diseases to access treatments that will at the very least change their lives for the better, if not save them. The looming “fiscal cliff” – Congress’ current means of tackling a substantial budget deficit – is a combination of tax increases and spending cuts that will kick in January 1, 2013, if no further legislative action is taken. And it’s a huge mistake.
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Three weeks ago, in recounting my participation in Charity Day at Cantor Fitzgerald, I mentioned that FFB had established October as Save Your Vision Month (SYVM). Well, now it’s here, so I wanted to reiterate what SYVM is all about and how the Foundation has been preparing for it the past couple of weeks.
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Video Included:
Now 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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Yesterday, 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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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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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. 