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    Leber Congenital Amaurosis Leber Congenital Amaurosis Leber Congenital Amaurosis Leber Congenital Amaurosis
    • About
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    Archives

    Tag Archives for: "Leber Congenital Amaurosis"
    0
    By Rosanne Smyle
    In Blog
    Posted February 19, 2018

    Curing Blindness: The Road To Treatment With LUXTURNA™

    This is the first in a series following the progress of Creed Pettit, a 9-year-old Florida third-grader, who is a candidate for the breakthrough gene-therapy drug called LUXTURNA™, approved as [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted January 21, 2018

    First, Diagnosis. Then, Genetic Testing. It’s Important.

    My Retina Tracker is a free and secure online registry launched by the Foundation Fighting Blindness that helps connect families dealing with rare inherited retinal diseases to feel less alone, [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted January 10, 2018

    Living with LCA: Brandon Biggs

    Brandon Biggs was diagnosed with vision loss — and ultimately with Leber congenital amaurosis (LCA) — as a toddler. His genetic mutation is LCA-CRB1, which can cause LCA, retinitis pigmentosa [...]

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    0
    By Sofia Sees Hope
    In Blog
    Posted January 10, 2018

    Being Married to Brandon: “A Precious Exercise of Mindfulness”

    By Claudia Zaghi-Biggs When I met Brandon in September 2014, I thought that I was talking to the most interesting person I had ever met. Not only was he the […]

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    0
    By Sofia Sees Hope
    In Blog
    Posted January 10, 2018

    Atom Biggs: ‘The Greatest Adventure of My Life”

    By Atom Biggs Raising a blind son has been one of the most exciting and inspiring experiences a dad can ever have. I’d like to tell you a little about […]

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    0
    By Rosanne Smyle
    In Blog
    Posted January 10, 2018

    Sonja Biggs: “My Normal and His Normal Are Just Different”

    Brandon Biggs is the chief financial officer with his mother Sonja in their company, he conducts accessibility research and he helps businesses make their software content more accessible to the [...]

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    0
    By Eissa Bass
    In News
    Posted December 20, 2017

    Sofia Sees Hope Lauds FDA Approval of LUXTURNA™

    LUXTURNA™ (voretigene neparvovec), is the first pharmacologic treatment for inherited retinal disease and the first gene therapy for a genetic disease in the US Ledyard, CT (Dec. 19, 2017) — […]

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    0
    By Rosanne Smyle
    In Blog
    Posted December 14, 2017

    Living with LCA: Life Through Vicky’s Eyes

    Preschooler Vittoria shrieks with delight as she bounds down the cobblestone way, toward the big statue of the angel riding a chariot. Later we see the almost-4-year-old, nicknamed Vicky, tossing [...]

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    0
    By Eissa Bass
    In News
    Posted December 4, 2017

    Sofia Sees Hope Expands Board of Directors

    Ledyard, CT (Dec. 4, 2017) — Sofia Sees Hope, a Ledyard, CT-based patient advocacy organization dedicated to transforming the lives of those affected by blindness caused by Leber congenital [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted December 1, 2017

    RPE65 Trial Patient Tami Morehouse: “There’s So Much To See”

    Tami Morehouse made research history in the Leber congenital amaurosis world, and in the nation, when at age 44 she became the oldest person in a successful LCA-RPE65 genetic therapy […]

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