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Displaying 1–10 of 138 resources results
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How an Assistive App Developer is Revolutionizing Accessibility
Beacon StoriesMeet Rebecca Rosenberg, the founder of ReBokeh Vision Technologies, whose journey from engineer to entrepreneur may have been guided by fate. Diagnosed with oculocutaneous albinism (OCA1) at a young age, Rebecca faced numerous obstacles due to the lack of assistive technology tailored to her unique needs. This inspired her to create an app that would revolutionize the world of assistive technology for those with moderate low vision.
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Life as a Teen with Retinitis Pigmentosa
Beacon StoriesAt a mere 15 years old, Ava Ruggiero’s world shifted when she received a diagnosis of retinitis pigmentosa. As Ava continues to find balance as a student and athlete, she discusses the challenges of navigating her diagnosis alongside her parents, Joseph and Stephanie.
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Talented Singer Overcomes Blindness with the Power of Melodies
Beacon StoriesSarah Hardwig’s love for music began from her earliest days, creating a purpose that would sustain even in the face of adversity. Diagnosed with Leber’s congenital amaurosis (LCA) before her first birthday, the young artist continues to defy all odds and utilize her voice as a powerful beacon of hope.
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Chloe’s Creative Journey with Vision Loss
Beacon StoriesChloé Duplessis is a legally blind digital collage artist in Denver, Colorado. At 39 years old, Chloé was diagnosed with Stargardt disease, which was a pivotal point in her creative journey to becoming a full-time artist and owner of Duplessis Art.
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Blind Author with Usher Syndrome Ignites the Literary World
Beacon StoriesAt the age of 22, Michael Garrigan received a life-changing diagnosis of Usher syndrome type 2. His vision gradually deteriorated over the years, and by the age of 45, he faced the reality of being legally blind. Determined to share his story and shed light on the capacity to triumph over darkness, Michael penned a remarkable memoir, “Ushered Out of Darkness,” in which he invites readers into his most vulnerable life moments and victories.
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Why Bob and Lupe Reintsma are Supporting the Foundation Fighting Blindness
Personal StoriesBob Reintsma has been passionate about finding cures for inherited retinal diseases for most of his life. Now, he and his wife, Lupe, want to make sure the work continues long after they’re gone. And they’re doing it in partnership with Foundation Fighting Blindness.
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Dan Day - Making a Difference Now and for Future Generations
Personal Stories“Because I have seen such tremendous progress over the years, and I want that progress to continue until the day when we have cures for all retinal diseases, it is important to me that the Foundation be part of my lasting legacy.”
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Personal Stories
“My husband and I have not been able to be significant Foundation supporters during our lifetimes,” she said, “but I would be honored to leave this gift as part of my legacy.”
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Beyond Labels: The Inspiring Journey of a Refsum Disease Advocate
Beacon StoriesAfter years of seeking answers, Alan Gunzburg was formally diagnosed with Refsum disease, a rare genetic disorder. Drawing on his unique journey, Alan sheds light on the obstacles he’s faced and how his experience motivated him to make a positive impact in the lives of others.
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The Retinal Research Community Mourns the Loss of Retinal Research Pioneer Thierry Léveillard
Beacon StoriesDr. Léveillard helped discover and develop a gene-agnostic, cone-preserving therapy for retinitis pigmentosa that’s moving into a clinical trial.
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