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    • About
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    Archives

    Author Archive for: "Rosanne Smyle"
    0
    By Rosanne Smyle
    In Blog
    Posted December 7, 2020

    Michael Kalberer’s Philosophy: Transcend Disability

    Born with cerebral palsy (CP), Michael J. Kalberer grew up with a philosophy that has served him well throughout his 43 years. “My parents raised me as an individual with a disability, not a [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted September 3, 2020

    Making Connections in the LCA Community Provides a Path Forward

    Danielle Senick of Norwich, Conn., reached out to Sofia Sees Hope more than three years ago when she needed answers about her deteriorating vision. Doctors diagnosed Danielle at age 6 months with [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted August 18, 2020

    Using Their Fingers, Blind Children Learn Music and Languages with Lux+Louise

    Building on her son’s love of music, singing, moving, and reading, Laura Steinbusch created a multilingual children’s songbook called Lux+Louise to help youngsters learn music by braille. With [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted July 20, 2020

    Nearly Three Years Later, LUXTURNA®™ Treatments Continue to See Success

    Since its launch in March 2018, breakthrough gene therapy LUXTURNA®™ continues to be successful in helping improve vision in people with inherited retinal disease due to mutations in both copies [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted July 15, 2020

    Clinical Trials and Emerging Research Show Promise for LCA Treatments

    Forty clinical trials and a lot of pre-clinical research into LCA treatments show promising pathways to discovering the next LUXTURNA®, according to Shannon Boye, PhD, the opening speaker for the [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted July 8, 2020

    Register Now for LCA-CRX Webinar Set for July 15

    Drew’s Beacon for Blindness and Foundation Fighting Blindness are hosting a webinar Wednesday, July 15, at 4:30 p.m. EST on current research involving LCA-CRX, an extremely rare form of Leber [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted June 28, 2020

    LCA Families ‘Mix and Mingle’ Virtually

    Families living with Leber congenital amaurosis (LCA) came together virtually, sharing their hopes and triumphs, their challenges and frustrations as part of the three-day Virtual VISIONS 2020 [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted May 28, 2020

    An LCA Diagnosis Leads to Founding A Nonprofit for This Family

    Even the Covid-19 cloud has a silver lining, and living proof is Andrew Picinich, a 4-year-old preschooler with LCA-CRX, an exceedingly rare form of Leber congenital amaurosis (LCA) caused by a [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted May 8, 2020

    Living with LCA: ‘It’s ABCs and 123s’

    Blink and you just might miss toddler Jordynn rocket past you. A force to be reckoned with when it comes to music and movement, Jordynn is 4 years old and lives with Leber congenital amaurosis [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted April 19, 2020

    Shaberman Combines Love of Science, Writing in Sci-Fi Novel Debut

    Ben Shaberman – Senior Director of Scientific Outreach & Community Engagement at Foundation Fighting Blindness – combines his skills in science and storytelling to create Retina Boy, a sci-fi [...]

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