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Displaying 1–10 of 190 stories results
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Living Life Through My Eyes: My Journey with XLRS
Invisible DisabilityThere are moments when I wish I could see the world the way everyone else does. But I’ve realized that focusing on what I’ve lost only takes away from what I still have. XLRS may affect my eyesight, but it doesn’t define who I am.
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Invisible Disability
Life is inherently uncertain, but what happens if we embrace that? Trust yourself and your intuition. My strength is for me to define, no one else.
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A Story About Losing Sight and Discovering the Power of Seeing Differently
Invisible DisabilityRead an excerpt from ‘I See You,’ where Meredith Kole shares her experience of being diagnosed with a blinding disease at age 13 and how art became a powerful form of self-expression, reflection, and resilience.
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Beacon Stories
Tamar Bresge is an artist, writer, and educator living with retinitis pigmentosa (RP) due to Usher syndrome. She reflects on her vision loss journey from hiding her diagnosis to embracing it as an inseparable part of her identity — and how her work in art, writing, and teaching has become a way to create the visibility and connection she once needed herself.
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Taking the Stage for Stargardt
Beacon StoriesDiagnosed with Stargardt disease at age nine, Havah Fleisner spent years feeling isolated by her vision loss before discovering confidence through pageantry and advocacy. Now, as Miss Northern Lights Teen 2026, she’s using her platform to create community, raise awareness, and inspire others living with blinding diseases.
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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.
