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Archive for the Stargardt disease Category

“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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Genetics 101: How Some Retinal Diseases are Inherited

Egg and spermLong before the advent of genetic testing, or even knowledge of DNA and RNA, astute observers noticed that many traits were passed from one generation to another. But it still can be difficult to understand why some people inherit a genetic disease and others do not. Also, it’s often not clear which family members are at risk of inheriting a condition.
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ARVO 2014: Three Promising CEP290 Gene Therapy Alternatives

Renee Ryalls explains the dual-AAV gene therapy she's developing.While gene therapies for retinal degenerative diseases are making groundbreaking strides in both human and laboratory studies, the most widely and successfully used human-engineered virus for delivering replacement genes to retinal cells — the adeno-associated virus, or AAV — has one significant limitation. It can’t deliver relatively large genes, namely those larger than about 4.5 or 5 kilobases (kb). (Bases are the building blocks of a gene, and its size is expressed in kilobases.)
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Black and Light: The Ongoing Saga of Louie McGee

Image of Louie McGeeLouie McGee. The name sounds fictional, as if it belongs to a protagonist in a children’s book who, after overcoming insurmountable odds, inspires others. But Louie is real, and, due to Stargardt disease, he’s legally blind. The St. Paul, Minnesota, 7th grader also plays soccer, runs track and swims. And he’s a superstar FFB fundraiser who’s youth-chaired VisionWalks and hosted Dining in the Darks — blindness awareness events, during which kids eat meals blindfolded — at his school, most recently last month.
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The Foundation’s Center Grants Foster Essential Retinal Research Collaborations

Question: How many researchers does it take to develop a retinal-disease treatment? (No, this isn’t a politically incorrect joke.) The answer is near the end of this article, but no looking ahead!
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RetNet: A Web-Based Guide to Every Retinal Disease Gene Known to Man

Dr. Stephen DaigerIt isn’t as addictive as posting your status to Facebook. Nor is it as entertaining as cat blooper videos on YouTube. And it won’t let you send 140-character rants about your political views through cyberspace. But if you are in any way connected to the world of retinal research, you’ll want to check out RetNet, the online catalogue of every known retinal degenerative disease gene. After you do, Steve Daiger, Ph.D., RetNet’s creator, will no doubt become your BFF.
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Update on Six Gene Therapy Clinical Trials Presented at VISIONS 2013

Dr Shannon BoyeWhether you’re a researcher or affected by a retinal disease, hearing the latest news from the clinical-trial front lines is a great perk of FFB’s annual conference. On the last day of VISIONS 2013, I had the privilege of moderating a compelling update on six gene-therapy clinical trials provided by Shannon Boye, Ph.D., a gene therapy developer at the University of Florida, and Michel Michaelides, M.D., a clinician-researcher at Moorfields Eye Hospital in the United Kingdom. All of these emerging treatments, given in recaps below, were made possible by Foundation funding.
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Patient Registries Help Advance Research for Rare Diseases

Image of Keyboard and StethiscopeRare disease research is challenging, because patient information about the conditions is inherently limited. Patient recruitment for clinical trials can be especially difficult, because so few people are affected.

To address these issues, a number of foundations, patient advocacy groups and governmental institutions have launched online registries to collect patient information for use by researchers, doctors and public health experts.
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