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Displaying 1–10 of 125 resources results
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The Inspiring Journey of an Endurance Athlete with Cone-Rod Dystrophy
Beacon StoriesDiagnosed with cone-rod dystrophy in his youth, Dan Berlin has defied all odds by becoming a global force in endurance sports and entrepreneurship. As an accomplished athlete, he has not only dominated marathons across the globe but also co-founded the Team See Possibilities organization, offering support to youth with blinding diseases.
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IRD Community Loses Usher Syndrome Research Trailblazer William Kimberling, PhD
Beacon StoriesDr. Kimberling helped discover the identification and characterization of several genes that cause Usher syndrome.
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NY Researcher’s App Transforms Commuting for the Visually Impaired
Beacon StoriesJohn-Ross Rizzo, a dedicated New York-based researcher, was confronted with life-altering news at a young age when he was diagnosed with choroideremia. Driven by the obstacles he faced due to his condition, he now stands as a key figure leading the development of advanced assistive technology, with the goal of reshaping the daily commutes of those with low vision and blindness.
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Finding the “Keys to the Kingdom”
Beacon StoriesTricia Waechter, who has retinitis pigmentosa (RP), refers to her white canes as the “keys to the kingdom.” Using a white cane has opened a whole new world for Tricia, and that is why her company, Blind Girl Designs, includes white canes on many of their apparel designs.
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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 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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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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