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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Beacon Stories
Maggie grew up watching her mom navigate retinitis pigmentosa (RP), shaping her understanding of how vision loss affects entire families. Today, she uses her voice to raise awareness, support research, and help others affected by blinding diseases feel less alone.
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“Asking for Help Is Not a Weakness”
Beacon StoriesAlthough signs of retinitis pigmentosa (RP) began much earlier, Marcela San Miguel Cantu wasn’t diagnosed until age 40 and only later came to fully understand how her vision was changing. Through asking for help and connecting with others, she found support, community, and hope for the future.
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Finding the Light Within: How Joslyn Turned Vision Loss into Purpose
Beacon StoriesJoslyn Marquez spent years searching for answers before being diagnosed with retinitis pigmentosa at the age of 16. Rather than allowing vision loss to define her, she transformed her journey into a source of purpose, community and empowerment.
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Jackson's New Discoveries After LUXTURNA
Beacon StoriesAfter receiving LUXTURNA at age 9, Jackson Kennedy began experiencing everyday moments he had never been able to see before—from ice cubes floating in a glass to traffic moving through a city street. Today, Jackson is an honor roll student and dedicated wrestler looking ahead to college, while embracing the possibilities his treatment has helped make possible.
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Beacon Stories
Since becoming involved with the Foundation Fighting Blindness 10 years ago, Brenda has become a dedicated leader, advocate and champion for the community. Whether welcoming someone newly diagnosed, leading the Fort Wayne Chapter or participating in a clinical trial to help advance research, Brenda has dedicated herself to creating more hope and opportunity for others.
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The Clinical Trial That Opened His World
Beacon StoriesAfter decades of adapting to vision loss from retinitis pigmentosa (RP), Manny Fernandez became one of the first people to receive an experimental gene therapy in a clinical trial. The experience not only restored a small part of his peripheral vision but also renewed his hope for the future and inspired him to encourage others to consider clinical trials, too.
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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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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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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.
