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    Blog

    0
    By Rosanne Smyle
    In Blog
    Posted May 19, 2023

    From Uncertainty to Understanding for Family of 4-year-old Living with LCA1 GUCY2D

    Desirae Potts breaks into tears when she recalls the first time a doctor said her infant son James had a disease she’d never heard of – Leber congenital amaurosis, known […]

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    0
    By Rosanne Smyle
    In Blog
    Posted May 2, 2023

    Connecticut Residents Living with Rare Diseases Voice Concerns to State Lawmakers

    One woman called doctor after doctor, only to hear they would not treat her and her two rare pediatric conditions because she turned 18 and no longer qualified for help. […]

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    0
    By Rosanne Smyle
    In Blog
    Posted April 21, 2023

    Connecticut Rare Disease Advisory Council Begins to Take Shape

    The 13-member Connecticut Rare Disease Advisory Council (RDAC) is in the middle of its making, with the announcement of its first six members. The council will give patients, families, [...]

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    0
    By Rosanne Smyle
    In Blog
    Posted April 11, 2023

    Music Brings Together Family Living with LCA6 RPGRIP1

    Jessi Crawford fancied the clarinet when she played in her middle school band, while classmate Ted Beaman favored the trombone and guitar. Never did they dream their love of music […]

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    0
    By Rosanne Smyle
    In Blog
    Posted February 23, 2023

    Second Global RDH12 Scientific Conference Brings Clinical Trials Closer to Reality

    The community of people living with Leber congenital amaurosis caused by mutations in the RDH12 gene moved closer to realizing the shared goal of establishing a clinical trial to find […]

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    0
    By Beth Ann Mayer
    In Blog
    Posted January 20, 2023

    Not Your Typical Monday – Connecticut Car Dealership Embraces Hope in Focus Message

    As general manager and vice president of Cardinal Honda in Groton, Conn., Kim Cardinal Piscatelli donates time and money to charities. But when she heard about Hope in Focus and […]

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    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 Bree Shirvell
    In Blog
    Posted December 9, 2022

    Let’s Chat About … Atsena Therapeutics’ LCA Research with Kara Fick and Shannon Boye

    Atsena Therapeutics, a clinical-stage gene therapy company focused on reversing and preventing blindness, has an ongoing Phase 1/2 clinical trial evaluating a potential therapy for Leber [...]

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    0
    By Bree Shirvell
    In Blog
    Posted November 1, 2022

    What’s for Dinner?

    We’re excited to announce what the Dinner in the Dark menu was for 2022! If you’ve never been to our Dinner in the Dark event, this is our primary fundraiser […]

    READ MORE
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