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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Archive for the Support Category
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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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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In my seven years with the Foundation, I’ve had the privilege of meeting countless families living with retinal diseases. Through those interactions, I’m constantly reminded that these conditions don’t just impact the lives of the people who are personally affected. They also alter the lives of the people – spouses, parents, siblings, friends – who love them.
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Video Included
You know, it seems like every month there’s a national campaign raising awareness about one important health-related cause or another, and January, as National Eye Care Month, was no exception. Just because it’s ended doesn’t mean we can forget about the importance of eye care, which is at the very heart of the Foundation’s mission to bring an end to retinal degenerations that affect more than 10 million Americans.
At the Foundation, we get asked tons of questions – so many, in fact, that, on occasion, I’m going to address the “most asked” for a specific subject. This time around, it’s one that’s on many minds: the clinical trials necessary to obtain FDA approval of a drug or treatment.
How do I enroll in, and then keep apprised of, clinical trials?
To stay abreast of clinical trials, visit this Foundation web page, where you’ll need to be registered, if you aren’t already. But that’s quick and painless, and it gets you on the list to receive informative publications and news alerts on retinal research.
For those of you who don’t know me, my name is Steve Rose, and I’d like to welcome you to Eye on the Cure, the Foundation Fighting Blindness’ first, and official, blog!
For the past seven years, I’ve been lucky enough to serve as chief research officer of the Foundation. Now, I had some pretty good gigs previously, including a 14-year stint at the National Institutes of Health, where I supervised many research initiatives. But I say “lucky,” in this instance, because the Foundation – or FFB, as it’s known to many – is truly a unique organization.
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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. 