Stories
Displaying 1–10 of 185
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Two Twins, One Rare Diagnosis, and a Family Holding on to Hope
Invisible DisabilityRaising two twins with the same rare condition comes with challenges that many people cannot see. Everyday tasks often require extra patience, planning, and support. Our twins may experience the world differently, but they face it with courage every day.
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More Than What You See: Navigating Vision Loss and Mental Health
Beacon Stories WellnessAt 25, Austin experienced sudden vision changes that led to a diagnosis of Usher syndrome type 2A, reshaping how he moved through the world and how he saw his future. The emotional impact of this vision loss affected his mental health, leading to isolation before he began to openly process his experience and seek connection. Today, he uses his journey to inspire Rare Perspective Co., creating space for more open conversations and understanding around vision loss.
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Meet Teddy: A Guide Dog Helping Navigate Life with Vision Loss
Invisible DisabilityIn honor of International Guide Dog Day, we’re spotlighting the life-changing partnership between people living with vision loss and their guide dogs, through the eyes of one very special dog.
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Seen at Last: How Love Is Blind Gave Madison a Platform for RP
Beacon StoriesFrom reality TV to real-world impact, Madison Maidenberg turned her Love Is Blind spotlight into a platform for blinding diseases. As a contestant living with retinitis pigmentosa, she’s challenging misconceptions about blindness and becoming a powerful voice for the blind and low vision community.
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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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From Hiding to Helping: How Cory Turned Vision Loss Into a Life With No Limits
Beacon StoriesAfter years of hiding his vision loss, Cory Rainford now uses his voice to help others navigate life with choroideremia. As his blinding disease progressed, he worked hard to keep it invisible, even leaving his dream job. Today, through his YouTube channel Legally Blind No Limits, Cory shares honest, humorous videos about adapting and finding community, showing others that life with vision loss can still be full of possibilities.
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Low Vision, High Hopes: My Journey with Stargardt Disease
Invisible DisabilityFor most of my life, I carried my vision loss quietly and invisibly. Vision is not only what we see. It is what we dare to believe is possible. And when that belief meets support, community, and opportunity — lives change.
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Hope Is Right Around the Corner
Beacon StoriesRosana was diagnosed with age-related macular degeneration (AMD) at 43, which would eventually cost her a pilot’s license, a driver’s license, and the independence she had always defined herself by. Rather than retreat, she adapted, moving closer to the beach, riding tandem bikes, and finding community through the Foundation Fighting Blindness. Today, she channels her experience with AMD into advocacy, driven by the belief that hope—and continued progress toward treatments and cures—are very much within reach.
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Seeing Science Through a Cellular Lens
Beacon StoriesOn International Day of Women and Girls in Science, meet Jillian Pearring, PhD, a Foundation Fighting Blindness–funded researcher whose work on photoreceptors and retinitis pigmentosa is helping advance treatments and cures for blinding diseases.
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Story Update: Seeing Through Your Disability
Beacon StoriesLance Johnson shares life with retinitis pigmentosa (RP) as a creator, father, and Foundation Fighting Blindness ambassador—advocating for awareness and advancing treatments and cures.
