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Archive for the Diseases Category

Embrace Your Exceptions: A Mantra for Understanding Retinal-Disease Inheritance

Stephen Daiger, Ph.D. and colleague Lori Sullivan, Ph.D.Inherited retinal diseases are difficult to understand merely because they’re so rare and diverse. More than 250 genes, when mutated, can cause them, yet collectively, they affect only 200,000 people in the United States.

Their widely varying impact on vision adds to the challenge. For example, the youngest sibling in a family may be nearly blind from retinitis pigmentosa (RP), while his or her older brother or sister with the same RP gene mutation can have near normal vision.

But as FFB-funded retinal geneticist Stephen Daiger, Ph.D., discussed at the RD2016 meeting in Kyoto, Japan, the complex and elusive nature of these conditions can also extend to the way they are passed down in families, making diagnosis and prognosis quite challenging. Dr. Daiger was one of nearly 300 retinal researchers who gathered September 19-24, 2016, for the world’s largest conference focused exclusively on retinal degenerative diseases. The conference was supported in-part by FFB.
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VISIONS 2016 – Keynote Speaker Dartanyon Crockett on Fear and Courage

Dartanyon CrockettAlmost from the start, the cards were stacked against Dartanyon Crockett. He was diagnosed, at an early age, with Leber’s disease, which caused him to be legally blind. At the age of 8, he lost his mother. And by middle school, he was relentlessly teased for being visually impaired.
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VISIONS 2016 – Dr. Richard Weleber Receives FFB’s Highest Research Honor, Recognized in Touching Video

Dr. Richard WeleberConsidering all that Richard Weleber, M.D., has accomplished over four decades —
including leadership and oversight of clinical trials for emerging retinal-disease therapies and innovations in retina imaging and functional evaluation at the world-renowned Casey Eye Institute, Oregon Health & Science University — it comes as no surprise that he’s been given FFB’s Llura Liggett Gund Award for career achievement. Dr. Weleber became the 10th recipient of the Foundation’s highest honor, named after FFB co-founder Lulie Gund, during the opening lunch of the VISIONS 2016 conference.
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VISIONS 2016 – Dr. Shomi Bhattacharya Wins FFB Award for Gaining an Understanding of Variations in Vision Loss

Dr. Shomi BhattacharyaInherited retinal conditions such as Stargardt disease and retinitis pigmentosa (RP) run in families. The diseases in some families span several generations with dozens of affected members. In other cases, a disease may only affect one or more siblings within a single generation. Researchers have understood the nature of these different inheritance patterns fairly well for several decades.
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Back in Baltimore – VISIONS 2016, FFB’s National Conference, Returns to Its Founding City

Baltimore's Inner HarborFor the second year in a row, the Foundation Fighting Blindness’ national conference — this year titled VISIONS 2016 — will take place in FFB’s founding city of Baltimore, Maryland, June 30-July 3. More than 500 people are expected to attend the event, which will offer dozens of research- and lifestyle-focused sessions designed for people who are visually impaired and sighted as well.
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Two Philanthropic Brothers – Selling Luxury Casual Wear for the Good of Retinal Research

Bryan and Bradford Manning in New York City.Bradford Manning and his brother, Bryan, have a great sense of humor. You can see it in the video for their new clothing line, Two Blind Brothers — which donates its proceeds to retinal research — and hear it when you talk to Bradford over the phone.
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A Steady Hand in Saving Vision

Dr. Robert MacLaren performing eye surgery.A retinal researcher can develop the best vision-saving stem-cell or gene therapy ever imagined, but if the doctor or surgeon can’t deliver it to the retina safely and effectively, the treatment is worthless. It could even be harmful.
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Fighting Blindness Gets Sheepish

A sheep in tall grass.We all know from the nursery rhyme “Mary Had a Little Lamb” that “everywhere that Mary went, the lamb was sure to go.” But what if the lamb had a vision-robbing retinal disease, making it challenging to find Mary prancing around a sunlit meadow, or catching some rays on the Jersey Shore?
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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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