Stories

Being diagnosed with anything can be hard, and you certainly will go through a range of emotions. You are not alone. Many have been in your shoes and have dealt with their diagnosis in different ways. Some feel a sense of relief when they can share their stories with others who are going through a similar situation. The Foundation Fighting Blindness is a beacon for those affected by blinding retinal diseases. With our Beacon Stories, we share individual’s journeys with their disease and how their drive fuels them to pursue their passions. Not only do we find their stories aspirational, we believe these individuals are true beacons of strength, champions of courage, and advocates for hope. We hope these stories provide you with light that will get you through the darkness. Collectively, we are stronger together – as a community. Do you have a story you'd like to share with the Fighting Blindness community? Let us know at Marketing@FightingBlindness.org.

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Displaying 1–10 of 180

  • Mar 16, 2026

    From Hiding to Helping: How Cory Turned Vision Loss Into a Life With No Limits

    After 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.

    Beacon Stories

  • Mar 10, 2026

    Low Vision, High Hopes: My Journey with Stargardt Disease

    For 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.

    Invisible Disability

  • Feb 23, 2026

    Hope Is Right Around the Corner

    Rosana 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.

    Beacon Stories

  • Feb 9, 2026

    Seeing Science Through a Cellular Lens

    On 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.

    Beacon Stories

  • Jan 26, 2026

    Story Update: Seeing Through Your Disability

    Lance Johnson shares life with retinitis pigmentosa (RP) as a creator, father, and Foundation Fighting Blindness ambassador—advocating for awareness and advancing treatments and cures.

    Beacon Stories

  • Dec 18, 2025

    The Super-Sticky Shoes: Living With Retinitis Pigmentosa When the World Can’t See the Glue

    In this deeply personal reflection, author Patti Brite Taylor shares what it feels like to live with retinitis pigmentosa—and how that experience inspired her mystery novel, The Vanishing Cactus, centered on a heroine with low vision.

    Invisible Disability

  • Dec 17, 2025

    Excerpt from Never Seen the Stars by Kate Korsh

    Read an excerpt from the novel, Never Seen the Stars, where Hattie reflects on living with retinitis pigmentosa, navigating family dynamics, and finding hope in her choices.

    Invisible Disability

  • Dec 8, 2025

    Where Movement Meets Meaning

    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.

    Beacon Stories

  • Nov 24, 2025

    My Journey with Retinitis Pigmentosa and the Foundation Fighting Blindness

    Zach 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.

    Beacon Stories

  • Nov 17, 2025

    Answers at Last: How Genetic Testing Revealed Zach’s Bardet-Biedl Syndrome

    For 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.

    Beacon Stories