Lindsey Rambo
Patient Advocate,
n/a
Lindsey Rambo was born with a rare inherited retinal disease and diagnosed at eight weeks old with a broad “disease of the retina.” For years, the cause of her vision loss remained unknown. Determined to live fully, she thrived in public school, excelled academically, played varsity sports, and participated in numerous activities—often without accommodations—to “fit in” despite the challenges of low vision.
At sixteen, Lindsey was told she would be blind by her twenties, a prediction that could have ended her optimism. Instead, she transformed that moment into motivation. Years later, with her husband’s support, she connected with the Foundation Fighting Blindness and the National Eye Institute. In 2018, at age 28, Lindsey finally received a diagnosis: Leber congenital amaurosis (LCA5), one of the rarest and most severe inherited retinal diseases.
Now legally blind, Lindsey works as a Teacher of the Visually Impaired (TVI) in West Virginia, using her experience to guide and empower students with vision loss. Through advocacy, faith, and community engagement, she continues to raise awareness for blindness research and education. Lindsey believes that a cure for blinding diseases is within reach—and dedicates her life to helping others see that hope too.
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