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AGTC’s XLRP Gene Therapy Performs Well in Extension of Phase 2 Clinical Trial
Research NewsThe three-month results support the planned launch of the company’s Phase 2/3 Vista trial
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Ambitious Entrepreneur Won’t Let Stargardt Stop Her
Beacon StoriesBeverley is a go-getter who does not let her Stargardt disease get in the way of living her life to the fullest. When Beverley isn’t hard at work as an entrepreneur, she enjoys spending time with friends, her dog, Loki, and is also an active leader of the Foundation’s Boston Chapter.
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Blind YouTuber Finding His Spot in Life
Beacon StoriesYouTuber Sam Seavey was diagnosed with Stargardt disease when he was just 11 years old. Sam didn’t fully accept his visual impairments until his early 30s. Now he’s helping others through “The Blind Life,” which is currently the most extensive resource for assistive technology on the internet.
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Sue Lives Life to the Fullest and Wants to Help Others Do the Same
Beacon StoriesMeet Sue Sanger. Sue was diagnosed with retinitis pigmentosa (RP) at the age of 29 but has continued to travel, advance in her legal and political career, and more. In the following story, Sue explains, in her own words, all she has accomplished since learning she has RP and why she’s a supporter and member of the Foundation Fighting Blindness Legacy Society.
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Rachel Wants to Raise White Cane Awareness
Beacon StoriesRachel Luehrs describes her journey of acceptance.
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First Patient Receives ProQR’s Emerging USH2A Therapy in Clinical Trial
Research NewsProQR, a developer of RNA therapies in the Netherlands, announced that the first clinical-trial participant has received its emerging treatment, which targets retinitis pigmentosa and Usher syndrome caused by mutations in exon 13 of the USH2A gene.
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Nobel-Prize-Winning Stem-Cell Researcher Delivers Keynote at FFB-Funded Conference in Kyoto
Research NewsDr. Shinya Yamanka discussed his early clinical trial for iPSC-derived retinal pigment epithelial (RPE) cells for a 78-year-old woman with advanced wet age-related macular degeneration (AMD).
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CME — What It Is, and Why People with Retinal Diseases Should Know About It
Research NewsDr. Gerald Fishman discusses cystoid macular edema (CME), a potentially damaging accumulation of fluid in the retina affecting up to 32 percent of people with retinitis pigmentosa (RP).
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Beacon Stories
When it comes to describing Eric Fulton, “gregarious” is a more-than-appropriate adjective for the husband and father of two who, fittingly, is also communications manager at the Bethesda-based Clark Construction Group. “It comes naturally to me,” he says of his ability to mix it up with people. “The cause makes it easier. But, otherwise, I’m pretty outgoing; I like to talk to people. It’s what I do.”
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A Legacy of Strength, Adaptability, and Generosity: Richard and Elizabeth Kamis
Beacon StoriesRichard and Elizabeth built a life rooted in resilience, service, and generosity, with Richard’s experience living with retinitis pigmentosa shaping their shared purpose. From breaking barriers in education to helping others, their impact continues to help advance research for generations to come.
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