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
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.
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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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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.
