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Beacon Stories
“I try not to get my hopes up too much, but I never lose hope; I’m determined. I just want to see my son’s face, see him get married, & see my grandchildren. I encourage everyone with a retinal disease to get a genetic test & to never ever give up hope.“
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Alice Bartlett – Back on That Horse
Beacon StoriesHis name is Battle. He’s an Arabian, stands more than 15 hands (or 5 feet) tall and weighs 1,000 pounds. He’s been with Alice Bartlett since his birth 26 years ago, and she’s been riding him since he was 2.
Alice, by the way, is legally blind.
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Orphan Drugs Get Special Treatment
Research NewsFor developers of treatments for rare diseases — including inherited retinal conditions — “orphan” status provides valuable benefits, such as tax incentives, access to special research grants and assistance with clinical trial design.
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Foundation News
With nearly two decades of leadership in vision and neuroscience research and a committed tenure with the Foundation, Dr. Laster will spearhead the Foundation’s scientific strategy in her new role.
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VISIONS 2024, the global conference of the Foundation Fighting Blindness, is a one-of-a-kind event in which individuals who are visually impaired, and their families, have the opportunity to hear about exciting advancements in blindness research.
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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.
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Beacon Stories
“My husband and I have not been able to be significant Foundation supporters during our lifetimes,” she said, “but I would be honored to leave this gift as part of my legacy.”
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Retinal Research Community Loses Beloved Pioneer Sam Jacobson
Beacon StoriesHis many contributions included pivotal work that led to LUXTURNA
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SeeShore Fest Fundraiser Success
Beacon StoriesHeather Napolitano started her DIY fundraiser, SeeShore Fest, seven years ago. The event has now raised over $109,000 to fund research finding treatments and cures for blinding diseases.
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AGTC Plans Further Clinical Development of Achromatopsia (CNGB3) Gene Therapy
Research NewsInterim results for pediatric patients with CNGB3 mutations were encouraging
