Three weeks ago, FFB kicked off its Front Lines Fan (FLF) campaign, in part to celebrate those who are on the front lines of fighting blindness. They include researchers, chapter leaders, those walking and racing for a cure, fundraisers, parents and, of course, people affected by retinal diseases. We also wanted to provide an opportunity for those who help us any way they can to be recognized. You can enter our FLF contest by either nominating yourself or someone you consider a deserving FLF.
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Archive for the Support Category
When I was 15, I was diagnosed with Usher syndrome, the leading cause of deaf-blindness in the United States. Although I’d had hearing aids since kindergarten, and could never see in dark places, it wasn’t until I started to trip over things in broad daylight that my parents became truly concerned.
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My ophthalmologist’s voice was firm and direct. “You’re going blind.” Tough words for a 5-year-old to digest.
Years later — despite efforts to cure my retinal disease, first as a graduate student, then as a postdoctoral researcher focused on ocular pathology — I came to accept the truth that those words carried. I was slowly being forced to adapt to a world not designed for me, or for any visually impaired person. But the progressive nature of my disease, retinitis pigmentosa, meant that time was on my side. I had time to change how I do things, how I communicate, how I think.
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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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After the trials they’d been through, Chris and Doug Day were overjoyed to welcome two children, Derrick and Meredith, into the world, even though they both have a rare retinal disease that renders them legally blind. And although the Nashes discovered a year ago that their 7-year-old daughter has something called Stargardt disease, which progressively diminishes vision, they know that Gracie will conquer any challenge put before her. Louie McGee, at age 12, has already proven as much to his parents. Living with the effects of Stargardt for seven years now, he’s one of FFB’s most creative fundraisers.
This week, the Foundation Fighting Blindness has much to be thankful for – its members, the tireless efforts of researchers and, of course, the readers of this blog, many of whom share their interest in our work via social media. But our biggest “thank you” goes to those who are directly affected by retinal diseases and do all they can to help FFB raise funds for research.
Rachel Weeks, who has Usher syndrome – a disease affecting both vision and hearing – is a dedicated triathlete. With guidance from her sister, Rebecca, she runs, swims and bikes her way through triathlons with only a 10-degree field of vision and 30 percent of her hearing. But once, as she prepared to plunge into the water with hundreds of competitors, a woman insisted on congratulating her for her efforts. At that particular moment, it served as a disorienting reminder of the challenges she faces.
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When Richard Faubion got the iPhone 4S – the first to include the intelligence software known as the female-voiced Siri – St. Patrick’s Day was coming up. “So I asked Siri to find me an Irish pub,” he recalls. “She told me of 17 locations and provided Yelp reviews, addresses, how far they were. All this came instantly. The things it can find and do – it’s amazing.”
Richard – who has retinitis pigmentosa (RP) and is the Foundation’s Director of Development, West Region – is among a growing legion of visually impaired people turning to the iPhone for assistive technology. To better understand what sets the device apart from others, I spoke with Richard and two other FFB associates affected by retinal diseases to get the skinny on the iPhone, both pros and cons.
With the Foundation’s Save Your Vision Month starting next week, I thought it might be a good time to share my thoughts about a tough decision many people affected by retinal diseases have to make – the decision to stop driving.
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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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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. 