Archive for the ‘Support’ Category
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.
The iPhone as Assistive Technology: The Good, The Bad and The Funny
Video Included:
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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