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    • About
      • Our Story
      • Our Vision/Mission
      • Our Team
      • Pressroom
    • For Families
      • What is LCA?
      • ID Your Gene
      • Clinical Trials
      • Resources
      • Rare Retinal Disease Glossary
      • Family Connections
    • Stories
      • Posts & Videos
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    • Get Involved
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    Blog

    By Eissa Bass
    In Blog
    Posted November 27, 2019

    Giving Tuesday: Help Provide Access to Free Genetic Testing

      When our daughter Sofia was 2, we knew something was wrong with her vision. By the time she was 5, doctors told us she perhaps had Leber congenital amaurosis, and the prognosis was grim: [...]

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    By Rosanne Smyle
    In Blog
    Posted October 29, 2019

    All About Clinical Trials

    Clinical trials are never done in a vacuum, or in a medieval basement where Dr. Frederick Frankenstein (pronounced Fronkensteen), his pretty lab assistant, Inga, and faithful houseboy, Igor, [...]

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    By Rosanne Smyle
    In Blog
    Posted October 16, 2019

    Retinal Disease Gene Therapy Breakthroughs Trace Their Roots to 19th Century Research

    Theodor Karl Gustav von Leber would be proud. So would Adolphe Franceschetti and Carl-Henry Alström.  Their research from the 19th and 20th centuries laid the foundation for groundbreaking gene [...]

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    By Rosanne Smyle
    In Blog
    Posted September 11, 2019

    Rare Disease Advocacy: There’s Power In Numbers

    Tell your story. Tell your story again. Then tell it again.   That’s the beginning of advocacy for rare disease.  “You have to be assertive and speak up. You don’t have time to waste!” advocate [...]

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    By Rosanne Smyle
    In Blog
    Posted September 11, 2019

    Kristen Steele: You’ve Gotta Fight for Your Right …

    Kristen Steele knows a thing or two about telling her story and getting what she needs to be her best. The 22-year-old from Council Bluffs, Iowa, is a licensed massage therapist in Iowa and [...]

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    By Rosanne Smyle
    In Blog
    Posted September 5, 2019

    Dr. Jean Bennett: ‘Seeing the Light with Retinal Gene Therapy’

    Known as a pioneer in gene therapy, Jean Bennett, MD, PhD, surveyed her audience of patients and families living with Leber congenital amaurosis and declared: “YOU are all the pioneers!” Dr. [...]

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    By Rosanne Smyle
    In Blog
    Posted August 22, 2019

    Explosive Growth Seen in Field of Rare Inherited Retinal Disease Research

    Advances in genetic sequencing boosted research into rare inherited retinal diseases (IRDs), making a tremendous impact on the number of clinical trials underway for genetic treatments. “There [...]

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    By Rosanne Smyle
    In Blog
    Posted August 20, 2019

    Human Genome Project: Critical to Modern Gene Therapy Success

    The long and sometimes uncompromising road to completing the Human Genome Project (HGP) paved the way for today’s surge in genetic therapy, Dr. Katherine A. High said in her presentation at the [...]

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    By Rosanne Smyle
    In Blog
    Posted August 7, 2019

    LCA Family Conference 2019: A Lot to Unpack!

    The news is out from our 2019 LCA Family Conference  and it’s terrific! Families living with Leber congenital amaurosis (LCA) and other rare inherited retinal diseases (IRDs) learned at Sofia [...]

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    By Rosanne Smyle
    In Blog
    Posted July 26, 2019

    LCA Family Conference 2019 Brings Together Rare Retinal Disease Community

    Superstar geneticists and a host of retinal doctors, researchers, advocates, industry leaders and patients converge in Philadelphia this weekend when Sofia Sees Hope presents its second LCA [...]

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