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Archive for the Other diseases Category

ARVO 2016: Choroideremia Gene Therapy in Clinical Trial Continues to Perform Well

Dr. Robert MacLaren during surgery. The annual meeting of the Association for Research in Vision and Ophthalmology (ARVO) in Seattle won’t start for another three days, but already there’s exciting research news to report. Five of six patients in NightStaRx’s choroideremia gene-therapy trial at the University of Oxford in the United Kingdom, which began in 2013, continue to benefit from the treatment.
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Two New Videos Highlight FFB’s Vital Role in Retinal Research

Dr. Boye in her lab, conducting a tourAs everyone knows, there is never just one side to a story. That’s certainly true in the case of Dr. Shannon Boye, whose FFB-funded research is the subject of not just one but two new Foundation videos.
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For Rare Disease Day – The Many Benefits of Genetic Research

Rare Disease Day logoIt’s apropos that Rare Disease Day 2016 will be held on the rarest day on the calendar—Leap Day, February 29.

However, collectively, rare diseases are not uncommon. About 30 million Americans, nearly 10 percent of our population, are affected by one of 7,000 rare diseases. They’re an important public health issue, making it incumbent upon us to work hard to eradicate them.
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Retinal Researchers May Be Looking for You

A patient registers with My Retina Tracker.One of the biggest challenges in overcoming rare retinal diseases is, well, that they’re rare. There’s limited information about the conditions in humans, making it difficult for researchers to understand why they cause blindness and develop vision-saving treatments.
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2015 Top 10 Retinal-Research Advances

Researcher in a labThe Foundation Fighting Blindness’ scientists, donors and volunteers made 2015 an outstanding year in our fight against blindness. As I tabulated the year’s top 10 research advances—all made possible through FFB funding—I realized that eight are for clinical trials of emerging therapies that are launching or underway.
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The Gift of Sight – Matched!

Your donation doubledIt’s holiday time, the giving season, when people not only buy gifts for family, friends and co-workers, but also donate to worthy causes—of which there are many. But, if you’ll permit me, I’d like to make a pitch for the Foundation Fighting Blindness (FFB), which happens to be offering a Holiday Board Match, meaning every donation is doubled.
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The Challenge Continues: FFB Chairman Gordon Gund is Interviewed on CNBC

Gordon Gund on CNBC in NantucketGordon Gund, who’s held in extremely high esteem by people inside and outside the Foundation Fighting Blindness (FFB), has been completely blind for decades. He lost his eyesight to a disease called retinitis pigmentosa in his thirties. Not that it slowed him down much. Among other accomplishments, he’s been a financier, venture capitalist, sports-team owner and sculptor. And, of course, he’s a co-founder of FFB and its chairman of the board.
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Donated Eyes Help Researchers Better Understand Retinal Diseases

a retina affected by RPMany people with retinal conditions such as retinitis pigmentosa (RP) and age-related macular degeneration don’t think they can donate their eyes after they’ve passed away. They can’t imagine anyone would want eyes that didn’t work well. But in reality, affected eyes are in big demand.
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Walking a Mile (or More) in Their Shoes

The Healey parentsThere’s an old saying that, depending on who’s doing the quoting, goes something like this: “You can’t really know a person until you walk a mile in his or her shoes.” That’s certainly true when it comes to grasping what it means to lose one’s eyesight to a retinal disease.
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VISIONS 2015 – Dr. José Sahel Receives Foundation’s Most Prestigious Research Honor

Dr. SahelI’ve known Dr. José Sahel for more than a decade, and every time I’m with him, I’m impressed by his humility and graciousness. He’s not much for rhetoric or small talk, but is always polite and insightful. Dr. Sahel is also very soft-spoken, but I think that’s his secret weapon. He forces you to really listen to what he’s saying.
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