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    Archives

    Tag Archives for: "inherited retinal disease"
    0
    By Eissa Bass
    In News
    Posted January 31, 2019

    Sofia Sees Hope Gives $100K For Research and Genetic Testing for Inherited Retinal Disease Patients

    A $100,000 donation from Sofia Sees Hope will support research into restoring vision for patients diagnosed with Leber congenital amaurosis (LCA). The grant will also provide access to genetic [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted December 13, 2018

    Living with LCA: ‘It does no good to have pity’

    Mikayla Larson, a 30-year-old mother living with a rare inherited retinal disease (IRD) called Leber congenital amaurosis (LCA) wants to reassure children living with the same disease that [...]

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    0
    By Sofia Sees Hope
    In Blog
    Posted July 17, 2018

    Tell Us Your Story: ‘Do Not Limit Yourself’

    By Angélica Bretón Morán I am 22 years old and I have LCA. My name is Angélica Bretón Morán, I am from Mexico, I am 22 years old and I […]

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    0
    By Rosanne Smyle
    In Blog
    Posted May 28, 2018

    Parent Support On Line 1

    In the sometimes-isolating world of rare inherited retinal diseases (IRDs) such as Leber congenital amaurosis (LCA), another option exists to help bring people together – support by telephone. [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted May 10, 2018

    Living With LCA: Maverick Johnston

    A revolutionary genetic treatment could improve the vision of 5-year-old Maverick Johnston, but his mom first wants to know more about the side effects and capabilities of the breakthrough drug [...]

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    0
    By Eissa Bass
    In News
    Posted April 6, 2018

    SSH Opposes States’ Efforts to Limit Access to LUXTURNA™

    In the wake of the December 2017 approval by the U.S. Food and Drug Administration of voretigene neparvovec (LUXTURNA™) to treat vision loss in patients with biallelic RPE65 mutation associated [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted March 28, 2018

    Post-Surgery: Beginning to See the Light

    This is the fourth 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 Rosanne Smyle
    In Blog
    Posted March 12, 2018

    Misty Lovelace: ‘I Can See Little Things’

    Told at age 12 she would be blind by 18 because of her Leber congenital amaurosis, Misty Lovelace of Kentucky participated in the gene therapy trials for LUXTURNA, to treat […]

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    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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