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    Archives

    Author Archive for: "Rosanne Smyle"
    0
    By Rosanne Smyle
    In Blog
    Posted October 18, 2021

    Sofia Sees Hope Rebrands with an Eye to the Future

    Sofia Sees Hope this month unveiled a new name and logo — Hope in Focus — as the organization sets its course for the next decade of work to benefit […]

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    0
    By Rosanne Smyle
    In Blog
    Posted October 18, 2021

    Our New Name – FAQs

    Why did we change our name? It’s simple: we’ve grown and matured as an organization. And we’re looking ahead to how we can best position this organization for the future. […]

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    0
    By Rosanne Smyle
    In Blog
    Posted September 29, 2021

    Let’s Chat About … the Importance of the Patient Voice in Rare Disease

    We hear a lot these days about the necessity of the patient voice in developing treatments, especially for people living with rare disease, such as Leber congenital amaurosis (LCA) or […]

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    0
    By Rosanne Smyle
    In Blog
    Posted August 3, 2021

    Let’s Chat About … the Importance of Self-Advocacy

    Living with vision loss, Tami Morehouse and Jack McCormick learned the challenging complexities of advocating for themselves so well, that they both now earn a living helping the general [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted June 24, 2021

    Natural History Study of Usher Syndrome Type 1F Launches

    A new Foundation Fighting Blindness initiative just getting underway is a Natural History study of Usher Syndrome Type 1F (USH1F) caused by a mutation in the PCDH15 gene. The objective […]

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    0
    By Rosanne Smyle
    In Blog
    Posted June 24, 2021

    Let’s Chat About … Patient Registries and My Retina Tracker

    Join the My Retina Tracker® registry and you’ll be contributing to science by driving research to help improve your quality of life and to find treatments and cures for Leber […]

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    0
    By Rosanne Smyle
    In Blog
    Posted May 28, 2021

    Navigating Life with CRB1

    Joseph F. Smith has been legally blind since birth. He lost what little sight he had in his mid-30s, when he learned he had Leber congenital amaurosis (LCA). Thirty years […]

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    0
    By Rosanne Smyle
    In Blog
    Posted May 12, 2021

    Encouraging News for CRB1 Gene Therapy Treatments 

    Early research into a form of Leber congenital amaurosis (LCA) caused by mutations in the CRB1 gene – including the discovery of a new version of a protein expressed by […]

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    0
    By Rosanne Smyle
    In Blog
    Posted April 29, 2021

    Let’s Chat About … Why Natural History and Patient Outcome Studies Matter

    Amid the intricacies of researching treatments and cures for rare diseases, such as Leber congenital amaurosis (LCA) and other inherited retinal diseases (IRDs), the patient remains the major [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted April 27, 2021

    Let’s Chat About … Genetics and Inherited Retinal Disease

    You or your loved one just received a clinical diagnosis of Leber congenital amaurosis (LCA), a rare inherited retinal disorder caused by a mutated gene. The disease causes severe vision […]

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