Stories
Displaying 1–10 of 175
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Beacon Stories
Runner, storyteller, and community builder — Eavan O’Neill turned her Stargardt disease diagnosis into a mission to connect and uplift others through her own lived experiences. Through Brightside, she’s redefining what it means to live boldly and authentically with vision loss.
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My Journey with Retinitis Pigmentosa and the Foundation Fighting Blindness
Beacon StoriesZach was diagnosed with Bardet-Biedl syndrome (BBS) through genetic testing from the Foundation’s My Retina Tracker® Program. Today, he is looking ahead with purpose — supporting research through the Foundation, planning for his future, and encouraging others to do the same.
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Answers at Last: How Genetic Testing Revealed Zach’s Bardet-Biedl Syndrome
Beacon StoriesFor years, Zach Lovell lived with vision loss that didn’t have a complete explanation. Genetic testing through the Foundation’s My Retina Tracker® Program revealed he had Bardet-Biedl syndrome (BBS), finally connecting decades of health challenges and bringing long-awaited clarity to him and his family. Today, Zach is looking ahead with purpose — supporting research through the Foundation, planning for his future, and encouraging others to do the same.
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Where Sight Fades, Music Begins
Invisible DisabilityBlindness isn’t always visible. It isn’t all or nothing because vision loss is a spectrum, but when I play, the music fills in what sight can not. It gives shape to what’s fading.
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Built on Grit: Breaking Barriers to Employment
Beacon StoriesIn honor of National Disability Employment Awareness Month, we’re celebrating Mike Hess, founder of the Blind Institute of Technology (BIT). After years of being the “token blind guy” in the corporate world, Mike turned his experience into a movement for equity and opportunity—empowering blind, low vision, and disabled professionals with training, resources, and pathways to meaningful careers.
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A Family United: Thomas’ Hero’s Journey with CRB1
Beacon StoriesWhen Becky’s son Thomas was diagnosed with a rare CRB1-associated disease, their family’s world changed. But today, Becky and Thomas are embracing advocacy, community, and research as they work to raise awareness and fuel progress toward treatments and cures.
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Beacon Stories
Maverick, a determined and adventurous 11-year-old, was diagnosed with X-linked retinoschisis (XLRS) at age six, which led his family to find support and resources through the Foundation Fighting Blindness. Since his diagnosis, Mav continues to pursue his passions in sports and outdoor activities, inspiring his family with his resilience and positive attitude.
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Beacon Stories
Lindsey Rambo once believed treatment was meant for someone else. Today, she’s the first participant in a groundbreaking gene therapy trial for LCA5—and her journey is lighting the way for what’s possible in the future of vision research.
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Invisible Disability
You cannot tell by looking at me that I am visually impaired. The #1 reaction to my lack of sight confession, though, hands down, is a nervous laugh followed by the person not believing me.
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Invisible Disability
When I walk around the neighborhood with my white cane, I still worry about stigma and how people perceive me. I’ve had to remind myself that the cane is a tool to keep me safe.
