Stories
Displaying 1–10 of 194
-
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.
-
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.
-
Invisible Disability
Through storytelling, writing, and speaking, I hope to challenge assumptions and remind people that disability does not diminish ambition, purpose, or possibility. Because behind every diagnosis is a person with dreams, talents, and a story still being written. And mine is just getting started.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
