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    Archives

    Tag Archives for: "LCA"
    0
    By Rosanne Smyle
    In Blog
    Posted March 6, 2018

    Ready, Set, Scheduled. Florida Boy Will Receive Gene Therapy Treatment to Reverse Vision Loss

    This is the second in a series following the progress of Creed Pettit, a 9-year-old Florida third-grader, who completed treatment in March with the breakthrough gene-therapy drug called [...]

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    0
    By Laura Manfre
    In Blog
    Posted February 28, 2018

    ‘We know how important it is to know your gene. We’ve lived it.’

    It took more than seven years to get a genetic diagnosis for our daughter. During that time, doctors were pretty sure she had LCA, although we also heard that maybe […]

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    0
    By Rosanne Smyle
    In Blog
    Posted February 26, 2018

    Living with LCA: ‘Then All Our Dreams Were Realized’

      Amy Reif still can’t hold back tears when she recounts first hearing that a ground-breaking genetic-therapy treatment targeting her daughter’s LCA-RPE65 gene officially received approval. [...]

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    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 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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