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    Archives

    Author Archive for: "Rosanne Smyle"
    0
    By Rosanne Smyle
    In Blog
    Posted January 4, 2023

    Plans in the Works for Connecticut’s New Rare Disease Advisory Council and 2023 Rare Disease Day

    Advocates for people living with rare diseases are collaborating with Connecticut Gov. Ned Lamont’s office and leaders of the Connecticut General Assembly’s Public Health Committee to build the [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted December 22, 2022

    Editas Medicine’s EDIT-101 Clinical Trial Update Brings Mixed News on LCA10 (CEP290) Research

    Data from Editas Medicine’s clinical trial on gene-editing therapy showed meaningful outcomes and improvements to treat a form of Leber congenital amaurosis (LCA). The improvements, though, were [...]

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    0
    By Rosanne Smyle
    In News
    Posted November 29, 2022

    A Spectacular Return to Dinner in the Dark 2022

    Our 7th Annual Dinner in the Dark came off as an exciting evening of hope and fun, and an opportunity to foster and connect with the mission of Hope in […]

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    0
    By Rosanne Smyle
    In Blog
    Posted September 20, 2022

    Boy’s vision improves after undergoing Compassionate Use gene therapy in UK for LCA4 (AIPL1)

    DJ and Brendan Broadbin came to our Hope in Focus LCA Family Conference with a lot of questions about their little boy’s blindness, and they left with amazing answers leading […]

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    0
    By Rosanne Smyle
    In Blog
    Posted August 31, 2022

    Genetic Tests Glean New Diagnoses for People Living with Rare Inherited Retinal Disease

    Three people who received diagnoses of Leber congenital amaurosis (LCA) in recent years – but lived most of their lives thinking they had retinitis pigmentosa (RP) – gave us the […]

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    0
    By Rosanne Smyle
    In News
    Posted July 31, 2022

    We’re On A Roll With 30 Percent More Survey Responses & We’re Keeping the Survey Open for Another Month to Include More Participants

    Please respond by Aug. 31, 2022 We’ve received 30 percent more responses in July to our Hope in Focus Leber Congenital Amaurosis (LCA) Community Survey, and we’re hoping to reach […]

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    0
    By Rosanne Smyle
    In Blog
    Posted July 26, 2022

    Connecticut Legislature Establishes Permanent Rare Disease Advisory Council

    Connecticut Gov. Ned Lamont signed into law years-in-the-making legislation establishing a permanent Rare Disease Advisory Council (RDAC), effective July 1, 2022. Lesley Bennett, Volunteer [...]

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    0
    By Rosanne Smyle
    In News
    Posted July 18, 2022

    Time to Take the Hope in Focus LCA Community Survey

    Responses Needed By July 29, 2022 Telling your story helps bring the Leber congenital amaurosis (LCA) community together. It also helps rare retinal disease advocates like us at Hope in […]

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    0
    By Rosanne Smyle
    In Blog
    Posted July 14, 2022

    Let’s Chat About…Gene-Independent Therapies for Inherited Retinal Diseases with Dr. Daniel C. Chung

    We’ve heard a lot about therapies to correct mutations in specific genes causing blindness or low vision, and now research is moving beyond single-gene correction to gene-independent therapies to [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted June 30, 2022

    Let’s Chat About…Advancing Treatments into Clinical Trials with Ben Shaberman

    Innovative funding initiatives created by the Foundation Fighting Blindness are accelerating research advances to find treatments for Leber congenital amaurosis (LCA) and other rare inherited [...]

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