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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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A Stem-Cells Video for Kids (and Newbies of All Ages)

Animated videoGiven that inherited retinal diseases are often diagnosed in childhood, it’s only fitting that kids get the opportunity to learn about the promising research and emerging treatments under development to save and restore their vision. Of course, the biology and genetics can be difficult to understand for even an educated adult, so when something kid-friendly is produced, especially a video, we are eager to share it.
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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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A True Survivor — Q&A with Fred Scheer, a World War II Vet with RP

Fred Scheer, US ArmyWhen I first met Fred Scheer, I was impressed by his quiet, friendly demeanor. I had no clue, at the time, that he was a U.S. Army veteran who’d been deployed during the D-Day invasion, captured by the Germans and then sent to a labor camp, from which he managed to escape. What is also interesting is that Fred is Jewish and has retinitis pigmentosa (RP).
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The Top Research Advancements of 2014: How Fast Can We Go?

lab photoAs we approach 2015, it’s inspiring to look back on 2014 and recount the numerous advancements we’ve made in developing vision-saving treatments and cures. When I joined the Foundation nearly a decade ago, virtually nothing was in a human study. We were curing lots of blind mice, and clinical trials seemed elusive. But, today, more than a dozen promising therapies are being evaluated in people, and at least a dozen more clinical trials are expected to begin in the next few years.
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A Spice for the Eyes

TumericTurmeric, also known as “the golden spice,” has been around for more than 4,000 years. In India, where Radha Ayyagari, Ph.D., grew up, it’s used widely as both a food spice and an herbal medicine for treating a variety of diseases, including cancer, arthritis, urinary-tract infections and digestive disorders. It has been scientifically established that curcumin, the active ingredient in turmeric, is a potent antioxidant. So it’s perhaps no surprise that Dr. Ayyagari, a professor of ophthalmology at the University of California, San Diego, is developing an extract from turmeric that may be useful in slowing retinal degeneration.
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Holiday Giving Means Doubling Your Gift

Allison Corona videoFor many reasons—not the least of which are holiday-related—December is a month when we all consider ways to give to others. And the spirit of giving has never been more apparent than it is right now at the Foundation Fighting Blindness. Not only is our end-of-year fundraising campaign in full swing; it’s bolstered by the Chairman’s Holiday Match. What that means is, for every dollar someone gives, it’ll be matched by another dollar—thus doubling its value. Give $25, it’s worth $50. Give $50, it’s worth $100. And so on.
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