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Posts tagged usher syndrome

FFB-Funded Scientists Report on Nine Promising Translational Research Efforts

Translational research — moving promising science out of laboratories and into clinical trials — is essential to getting vision-saving, retinal-disease treatments out to the millions who need them. With that said, translational research is also costly and high risk and requires extensive clinical development and regulatory knowledge.

The Foundation Fighting Blindness has taken the translational challenge head on by investing more than $75 million in therapy-development projects with strong clinical-trial potential through its Translational Research Acceleration Program (TRAP), which includes Gund-Harrington Scholar Awards.
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Artist with Usher Syndrome Excited to Register on My Retina Tracker to Drive Retinal Research

Artis Dana Simon at work.In a post at asharedvision.com, artist Dana Simon describes her experience with My Retina Tracker, a free and secure online registry for people with inherited retinal diseases. My Retina Tracker provides researchers with invaluable information that helps them study retinal diseases, and informs patients when their profile matches clinical-trial criteria. Examples of Dana’s artwork can be found on her website.

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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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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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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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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VISIONS 2015, Faces of VISIONS – Carol Brill

Carol Brill“If one person’s giving me a hard time, I’m not going to let him ruin my day,” says Carol Brill. “I always remember there are seven billion other people in the world who can make me happy.”
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VISIONS 2015 – Dr. Shannon Boye Receives FFB Award for Excellence in Gene-Therapy Research

Shannon Boye accepting the awardWhen it comes to developing innovative gene therapies for retinal diseases, few researchers are doing more than Shannon Boye, Ph.D., and her laboratory staff of 10 at the University of Florida. In addition to advancing a gene therapy for Leber congenital amaurosis (LCA) caused by GUCY2D mutations toward a human study, Dr. Boye and her team are enhancing gene-delivery systems by making them safer to administer and able to carry larger payloads than current systems.
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ARVO 2015 Highlight: The National Eye Institute Invests $4 Million in Audacious-Goals Research

future of retinal researchThe National Eye Institute’s (NEI) establishment of its Audacious Goals in 2013 was a watershed moment in the drive to cure blinding retinal diseases. The mission of the program—to regenerate the neurons and neural connections in the eye and visual system—is synonymous with the Foundation’s mission to eradicate retinal diseases. Most important, it means that the NEI is making significant investments in research that will benefit people with retinal conditions, such as retinitis pigmentosa, Usher syndrome, Stargardt disease, and age-related macular degeneration.
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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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