Inspirational Voices from the Fighting Blindness Community
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.
Beacon Stories
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At the age of five, Livie was diagnosed with LCA but her doctor immediately told her parents that clinical trials were underway and that Livie could soon be eligible for treatment. Not long after, they got a phone call from Spark Therapeutics and Livie received LUXTURNA®. Now eight, Livie’s confidence is at an all-time high with her “new eyes.”
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Seeing Research Advances Firsthand
Mark does not let his retinitis pigmentosa diagnosis keep him from doing what he loves most, including spending quality time with his family. And in 2019, Mark began participating in a clinical trial, which he describes as life-changing.
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Learning to Fall After Vision Loss
When Justin’s vision loss progressed quickly due to retinitis pigmentosa at 25 years old, he thought skateboarding wouldn’t be possible anymore. Ten years later, with the help of his white cane and audio devices, Justin is now working to enhance accessibility in skateboarding for the blind and visually impaired community.
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Michael was matched with his first guide dog, Geo, a yellow Labrador retriever, in March 2020, two years after he applied with Guiding Eyes for the Blind. Michael and Geo now have a relationship unlike any other.
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Telling His Story of Resilience
Chad has been working in the corporate world for the last 20 years. But after becoming the first blind executive to graduate from the Harvard Business School leadership program, he realized his purpose in life is to help others by sharing the lessons he learned while losing his eyesight. He can now add published author to his repertoire with his new book, Blind Ambition.
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The Beauty in Embracing Yourself
Award-nominated recording artist Lachi has collaborated with some of the biggest names in the industry with millions of streams on her music. But with all her many amazing musical accomplishments, it wasn’t until a few years ago that she fully embraced herself as a legally blind artist who identifies with the disability community as closely as she does with music.
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Sirine’s passion in life is music. To help cope with her vision loss, Sirine has turned to singing and songwriting as an outlet to express herself, which won over the hearts of the judges and fans of Britain’s Got Talent.
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Seeing Through Your Disability
30-year-old Lance Johnson is a video editor and podcaster living in Brooklyn, New York. Despite being diagnosed with retinitis pigmentosa (RP) at a young age, Lance has never let his RP change his drive and passion for creating.
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The faces behind RP Hope, Save Sight Now, and Sofia Sees Hope are all immensely dedicated to their nonprofit’s missions. The inspiration behind these organizations is similar, but their story and commitment are uniquely personal.
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Fighting RP on the Foundation’s Frontline
Michelle Glaze, the Foundation’s associate director of professional outreach, shared her personal story of being diagnosed with retinitis pigmentosa (RP) in the film ‘Decoding disease.‘ In her own words, Michelle also describes her journey with genetic testing and the Foundation Fighting Blindness’ impact on her life.
