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Traveling, Whether It Is Dark or Light

Moira Shea walking with her guide dog, Finnegan, in Barcelona, Spain.In November of 1971, the same year the Foundation Fighting Blindness (FFB) was established, I was diagnosed with Usher syndrome, a disease that causes both hearing and vision loss. I was 15 at the time, and my parents and I quickly became involved with FFB, and over the past 45 years, I’ve been able to meet many others dealing with the fear of blindness.
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ARVO 2016: High-School Sophomore Finds Gene Mutation in Family with Choroideremia

Aditya A. Guru explaining his posterWhile I was perusing posters on genetic research in the exhibit hall at the ARVO annual meeting, Radha Ayyagari, Ph.D., an FFB-funded genetic scientist from the University of California, San Diego took me by the arm and said, “Come with me. There’s something you really need to see.”
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ARVO 2016: Emerging Drug Targets Toxic Build-Up in Stargardt Disease

Dr. Hendrik Scholl at ARVO 2016.Like many diseases affecting the macula, the center of the retina, Stargardt disease is a waste-management problem. The “garbage” comes from the processing of vitamin A, which is an essential nutrient for vision. If you think of the retina as the engine for vision, vitamin A is the fuel; it enables the retina to convert light into the electrical signals that enable vision. And just like gasoline, which produces exhaust, vitamin A, when metabolized, leads to undesirable by-products.
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ARVO 2016: What Does It Take to Develop a Stem-Cell Therapy for the Retina?

Drs. Jeffrey Stern and Sally TempleThe effort to restore vision lost to retinal diseases using stem cells can sound so tantalizing simple. The researcher gets some stem cells, turns them into retinal cells, puts them in the patient’s retina to replace lost cells and—voila!—the patient can see again.
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ARVO 2016: ProgSTAR, FFB-CRI’s Stargardt Disease Patient Study, Highlighted

Janet Cheetham, ProgSTAR's liaison to FFBOne of the hot topics at ARVO 2016 is ProgSTAR, the natural history study for people with Stargardt disease funded by the Foundation Fighting Blindness Clinical Research Institute (FFB-CRI). I caught up with Janet Cheetham, Pharm.D., the project’s liaison to FFB, to explain why the effort is important to therapy development. Having spent more than three decades in the development of retinal and ophthalmological treatments at Allergan, she brings a wealth of insight and knowledge to her role.
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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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Treatments for Retinal Diseases are Leading to Therapies for the Brain

An image of the brainThe retina—the thin, fragile layer of tissue lining the back of the eye—gives us the invaluable gift of vision. It works like film or digital sensors in a camera by converting the light that enters our eye into electrical signals. Those signals are sent over the optic nerve to the back of the brain, where they are used to create the images we see.
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A Testament to the Human Spirit

Tyler MillardIn 2012, when Tyler Millard wrote the song “Alive”—now available on iTunes, with proceeds going to the Foundation Fighting Blindness—he was having a rough time. Since being diagnosed with retinitis pigmentosa (RP) seven years earlier, he’d lost enough eyesight to have to give up his plans to teach math. He’d also taken up the guitar and was singing and songwriting, although the gigs were few and far between.
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