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Archive for the Diseases Category

Up in the Air – Almost Getting Stranded at the Airport

Airplane flying out of O'HareBecause of vision loss caused by retinitis pigmentosa, I’m almost completely blind. That does not, however, stop me from traveling alone. I do have one fear, however—being stranded at the airport. It was only recently that it became a real possibility.
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Need-to-Know Information about Clinical Trials

clinical trial patientWith about 15 clinical trials underway for inherited retinal diseases, and several more poised to begin in a few years, patients are eager to sign up for access to potential vision-saving therapies.
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A Renaissance Man with Vision

Louis PosenLouis Posen is one of the coolest guys on the planet. He’s president and CEO of Hopeless Records, a company he founded at the age of 21—despite the fact that he was losing eyesight to retinitis pigmentosa (RP). The 43-year-old is also a National Trustee of the Foundation Fighting Blindness. And he got into the music business by accident.

In high school, he was a punk-rock aficionado, buying records and going to every local concert he could. In film school, he came to appreciate the positive influence art, including music videos, had on people’s lives. But this was a time when many punk groups couldn’t afford to produce the high-quality videos to which many viewers were accustomed.
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“You Don’t Look Blind”

EyeCure - don't look blind 2 bPerhaps the biggest misconception about people affected by retinal diseases is that they see nothing at all. While some have, indeed, gone completely blind, most are in the process of losing their vision. And depending on the person, and the disease, this takes years or decades. In some cases, central vision goes first, in others, peripheral vision.
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What Everyone with a Retinal Disease Should Know about Vitamin A

blue eyeIf you think of your retinas as the engines that power your vision, then vitamin A is their fuel. Without vitamin A in our diets, we wouldn’t see.
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For Rare Disease Day, Help Us Fight Retinal Diseases

logo - Rare Disease DaySince its inception in 1971, the Foundation Fighting Blindness has focused its efforts on helping people with rare diseases. In the United States, a rare disease is defined as that which affects fewer than 200,000 people. And, in fact, most vision-robbing retinal diseases—retinitis pigmentosa, Stargardt disease and Usher syndrome included—fall into that category.
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The Philanthropy 50: The Gunds Make the List of Top Donors in 2014

Gordon and Llura GundIt’s quite a list. On it, among others, are the Gateses, a Rockefeller, Google’s co-founders, a former New York City mayor and the founding president of Facebook. A list of America’s richest people, you ask? Well, not exactly. Compiled by The Chronicle of Philanthropy, “The Philanthropy 50” is a ranking of the country’s top donors in 2014, who gave almost $10 billion, collectively, to a plethora of non-profits. Coming in at #37 is a couple near and dear to FFB’s heart—Gordon and Llura Gund.
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CME – What It Is, and Why People with Retinal Diseases Should Know About It

Dr. FishmanIn this Q&A, Gerald Fishman, M.D., a world-renowned clinical researcher and longstanding member of FFB’s Scientific Advisory Board, discusses cystoid macular edema (CME), a potentially damaging accumulation of fluid in the retina affecting up to 32 percent of people with retinitis pigmentosa (RP) and related conditions. It’s a complication that can make matters worse for retinas already fragile from degenerative disease. While diagnosis isn’t always straightforward, CME can be treated to minimize vision loss.
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The Story Behind Be My Eyes, a New App for the Blind

Hans WibergConsidering how long trees have been around, it’s hard to believe dendrochronology, the practice of dating trees by their rings, wasn’t invented till the mid-1940s. “Anyone could have come up with that sooner,” Hans Jørgen Wiberg, a 51-year-old Denmark resident, says with a chuckle. “I kind of feel the same way.”
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‘Maybe I’ll Come Up with a Cure’ – Nathan Hayes’ Story

Nathan HayesLike his parents, Nathan Hayes keeps up with the latest advances in retinal research. He’s even had some skin removed, so that a researcher can create stem cells that may someday restore the vision he’s lost to retinitis pigmentosa. “I figured I’ve learned so much about the science, I might be a researcher myself,” he says. “Maybe I’ll come up with a cure.”
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