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Archive for the Stargardt disease Category

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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Promising Research Highlighted at Meeting of Retinal Gene Therapy Experts

genesWhen it comes to fighting blinding retinal diseases, nothing has been more exciting than the advancement of gene therapies into clinical trials. And, with human studies of gene therapies now underway for Leber congenital amaurosis (LCA, RPE65 mutations), Usher syndrome type 1B, Stargardt disease, retinoschisis, choroideremia and retinitis pigmentosa (MERTK mutations), scientists are gaining new knowledge every day about the best technologies and methodologies for gene-therapy development.
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Sun and Funds: FFB’s Annual Summer Campaign

Summer Challenge web pageWe all know that Memorial Day is not, technically, the first day of summer. But seeing as we like to stretch summer out as much as possible, it only makes sense to kick it off… well… a few weeks early. The same premise is behind FFB’s Summer Challenge to End Blindness campaign, which began Memorial Day weekend and continues through the upcoming season.
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Need-to-Know Information about Clinical Trials

clinical trial patientWith about 15 clinical trials underway for inherited retinal diseases, and several more poised to begin in a few years, patients are eager to sign up for access to potential vision-saving therapies.
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“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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