Piggybacking on last week’s post by our CEO, Bill Schmidt, I wanted to tie two personal stories to exceptional advances made in retinal research in 2012. I’d be remiss if I didn’t mention that these advances were made possible by the generous support of FFB donors, and that future advances – which, eventually, will help 10 million Americans alone – depend on our donors’ continued support. I’ll revisit fundraising later in this post, but, first, you’ll find the first of the two stories – on how gene therapy restored some of a boy’s sight – below. The next story will be posted later this week.
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Rich Shea
As the Foundation Fighting Blindness’ senior writer, Rich writes and edits content for all of the Foundation’s print and online publications, including its blog, Eye on the Cure. Previously, he was a journalist for more than 20 years, covering everything from education to entertainment to public health. As an Eye on the Cure blogger, he writes posts about Foundation members, events and researchers as well as coping and lifestyle issues.
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.
Amazing what a little ingenuity, coupled with a basic need, can make happen. Twenty-four-year-old Anirudh Sharma, a computer engineer from India, has, according to a recent article in The Economist, come up with a design for a shoe that would help the visually impaired get where they need to go – without a cane, a dog or any other form of assistance.
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We, at Eye on the Cure, like to keep folks up-to-date on the latest retinal research developments, as soon as they’re vetted – meaning verified as legitimate – and/or come in. But we also appreciate when the mainstream media chimes in, especially when they cite the Foundation’s efforts and expertise.
It was only a few days after what’s known as a “bionic retina” was implanted behind Miikka Terho’s left eye – the one that had completely lost vision 16 years previously – that he started to “see” again.
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What a difference a year makes. Last year, competing in the teen category of the Miss Florida USA pageant, Connor Boss stumbled on a set of stairs while making her way to the stage. Only family and friends knew the reason why. This year, the 18-year-old will compete in the same pageant as an adult. And thanks to ABC’s Good Morning America, she’ll do so as someone known to have Stargardt disease.
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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. 
A $2 Million Bridge Over Troubled Waters
By Rich Shea on October 30, 2012 | 3 Comments
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When most people think of Art Garfunkel, they not only think of him as half the folk-pop duo Simon & Garfunkel; they think of him as the singer of “Bridge Over Troubled Water,” which includes the lyrics “I’ll take your part/ when darkness comes/ and pain is all around.” Appropriately enough, you can now also think of Garfunkel as a major player in the fight against blindness.
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