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
-
How an Assistive App Developer is Revolutionizing Accessibility
Beacon StoriesMeet Rebecca Rosenberg, the founder of ReBokeh Vision Technologies, whose journey from engineer to entrepreneur may have been guided by fate. Diagnosed with oculocutaneous albinism (OCA1) at a young age, Rebecca faced numerous obstacles due to the lack of assistive technology tailored to her unique needs. This inspired her to create an app that would revolutionize the world of assistive technology for those with moderate low vision.
-
Life as a Teen with Retinitis Pigmentosa
Beacon StoriesAt a mere 15 years old, Ava Ruggiero’s world shifted when she received a diagnosis of retinitis pigmentosa. As Ava continues to find balance as a student and athlete, she discusses the challenges of navigating her diagnosis alongside her parents, Joseph and Stephanie.
-
Talented Singer Overcomes Blindness with the Power of Melodies
Beacon StoriesSarah Hardwig’s love for music began from her earliest days, creating a purpose that would sustain even in the face of adversity. Diagnosed with Leber’s congenital amaurosis (LCA) before her first birthday, the young artist continues to defy all odds and utilize her voice as a powerful beacon of hope.
-
Chloe’s Creative Journey with Vision Loss
Beacon StoriesChloé Duplessis is a legally blind digital collage artist in Denver, Colorado. At 39 years old, Chloé was diagnosed with Stargardt disease, which was a pivotal point in her creative journey to becoming a full-time artist and owner of Duplessis Art.
-
Blind Author with Usher Syndrome Ignites the Literary World
Beacon StoriesAt the age of 22, Michael Garrigan received a life-changing diagnosis of Usher syndrome type 2. His vision gradually deteriorated over the years, and by the age of 45, he faced the reality of being legally blind. Determined to share his story and shed light on the capacity to triumph over darkness, Michael penned a remarkable memoir, “Ushered Out of Darkness,” in which he invites readers into his most vulnerable life moments and victories.
-
Beyond Labels: The Inspiring Journey of a Refsum Disease Advocate
Beacon StoriesAfter years of seeking answers, Alan Gunzburg was formally diagnosed with Refsum disease, a rare genetic disorder. Drawing on his unique journey, Alan sheds light on the obstacles he’s faced and how his experience motivated him to make a positive impact in the lives of others.
-
The Retinal Research Community Mourns the Loss of Retinal Research Pioneer Thierry Léveillard
Beacon StoriesDr. Léveillard helped discover and develop a gene-agnostic, cone-preserving therapy for retinitis pigmentosa that’s moving into a clinical trial.
-
Breaking Barriers as an Attorney With Usher Syndrome
Beacon StoriesTara Hubbard Bowman is a woman of extraordinary talents. A beloved twin sister, mother of two, and wife of 10 years, Tara leads a fulfilling life dedicated to advocating for others through law.
-
Beacon Stories
Eric Ringham is a retired senior editor at Minnesota Public Radio News, where he supervised arts and education coverage. Before joining the MPR staff in 2009, he completed almost 30 years at the Star Tribune in Minneapolis, serving most of that time as commentary editor. Ringham also works part-time as a voice and stage actor. He and his spouse, Ann Wagner, live in south Minneapolis.
-
I Am Blind, but I Am Not the Blindness
Beacon StoriesDr. Ann Wagner is a Board-Certified Clinical Psychologist who has worked at the Minneapolis VA HCS for the past 23 years, serving veterans and their families. She works primarily on the PTSD Clinical Team providing evidenced-based assessments and interventions for PTSD and other trauma-related problems. Dr. Wagner herself is legally blind due to retinitis pigmentosa.
.jpg)
