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Displaying 691–700 of 728 for “Visions 2020”
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Jul 22, 2019
13 year old Kailey Reichardt’s personal essay about her little sister Ashlyn, who was diagnosed with Leber congenital amarosis (LCA) at a young age. Kailey is a Beacon for other siblings impacted and going through similar situations.
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Oct 16, 2018
Kai Wang was 18 months old when he was diagnosed with the condition. His parents never imagined the extraordinary journey they would take with their son when they learned he had a condition that would render him blind.
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Oct 20, 2013
Just How Tricky Halloween Can Be
For those with night blindness, a symptom of many retinal diseases, most notably retinitis pigmentosa, or RP, navigating a trick-or-treating throng can be, well, a nightmare.
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Apr 10, 2013
Reflections on Life with Usher Syndrome
Foundation Board Member Moira Shea describes her life with a retinal disease.
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Nov 13, 2023
IRD Community Loses Usher Syndrome Research Trailblazer William Kimberling, PhD
Dr. Kimberling helped discover the identification and characterization of several genes that cause Usher syndrome.
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Feb 27, 2023
Rewriting the Narrative as the First Black Deaf-Blind Journalist
Steven McCoy has made history as the first black deaf-blind journalist in the world, as he was recently diagnosed with Usher syndrome after a lifelong struggle with hearing loss. Equipped with a passion for storytelling and advocacy, he now uses his voice to create lasting change within the entertainment industry and deaf-blind community.
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Jan 9, 2023
Retinal Research Community Loses Beloved Pioneer Sam Jacobson
His many contributions included pivotal work that led to LUXTURNA
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Dec 13, 2021
At only three months old, Brendon was diagnosed with x-linked juvenile retinoschisis (XLRS). But with several other family members also with XLRS, Brendon knew he could still follow his passions for science and space. Now 22, Brendon is an Aerospace Engineer, starting a PhD program at UCF, and was recently awarded the prestigious National Science Foundation’s Graduate Research Fellowship.
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Nov 15, 2021
At the age of five, Livie was diagnosed with LCA but her doctor immediately told her parents that clinical trials were underway and that Livie could soon be eligible for treatment. Not long after, they got a phone call from Spark Therapeutics and Livie received LUXTURNA®. Now eight, Livie’s confidence is at an all-time high with her “new eyes.”
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May 10, 2021
A Mother’s Perseverance for Her Son
After learning Preston needed to wear an eye patch, his mom Carmen wanted to find resources and support on eye patching, but she couldn’t pinpoint anything on the internet pertaining to children’s books about her son’s specific conditions. That’s when Carmen decided to write a children’s book to educate children and parents on why someone wears an eye patch.