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Home / Stories - Page 6

Stories

Browse by type: Type 1, infantile Type 2a, late infantile Type 2b, juvenile Type 3, adult

  • Stories

    Kinley and Kennedy’s Story

    February 1, 2022August 19, 2026

    Our Journey to Diagnosis By Kylie Harrison “Two of your children have a fatal, untreatable…

    Read More Kinley and Kennedy’s StoryContinue

  • Stories

    Emily’s Story

    February 22, 2021August 19, 2026

    Like most people, Emily Blu loves spending time with her friends, family, and online. She…

    Read More Emily’s StoryContinue

  • Stories

    Clara’s Story

    December 1, 2020August 19, 2026

    Please watch Clara’s family’s video: This is a wonderful article about Clara and her family’s…

    Read More Clara’s StoryContinue

  • Stories

    Cas’ Story

    November 23, 2020August 19, 2026

    From Cas’ Mother: Cas was a beautiful, happy boy.  He had beautiful eyes and hair…

    Read More Cas’ StoryContinue

  • Stories

    Sofia and Stephanie

    August 25, 2020August 19, 2026

    Sofia, developed up to 1 year and 8 months as a normal child, regression began…

    Read More Sofia and StephanieContinue

  • Stories

    Nastya’s Story

    July 25, 2020August 19, 2026

    Nastya’s Story Until the age of one year old, Nastya grew and developed like an…

    Read More Nastya’s StoryContinue

  • Stories

    Darian’s Story

    July 1, 2020August 19, 2026

    DONATE We are living a parents worst nightmare. Our sweet son Darian, was recently diagnosed…

    Read More Darian’s StoryContinue

  • Stories

    Elena’s Story

    June 8, 2020August 19, 2026

    Elena was diagnosed at age 23 and is from Russia.  She is the rare of…

    Read More Elena’s StoryContinue

  • Stories

    Lindsay’s Story

    April 1, 2020August 19, 2026

    Lindsay is kind and humorous. Her favorite movie is Tombstone. She loves theme parks and…

    Read More Lindsay’s StoryContinue

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  • Connect With Us
    • GM1 Families: Start Here
      • Resources For GM1 Families
      • Get in Touch
    • Reach Out
      • Contact Us
      • Share Your Story
      • Share a Quote
    • Resources
      • Subscribe to the Newsletter
      • Newsletter Archives
      • Blog
      • Caregiver Support Group
      • Friends Facebook Group
    • Events
      • GM1 Community Conference
      • GM1 Awareness Day
      • Rare Disease Day
      • See Our Events Calendar
    • Community
      • Community Stories
      • Family Videos
      • In Memoriam
  • Understanding GM1
    • What is GM1?
      • Life Expectancy
      • Causes & Incidence Rates
      • Download a One-Page Overview
      • Quick Facts
    • Advancements and Research
      • Latest Research
    • Subtypes of GM1
      • GM1 Type 1 – Infantile
      • GM1 Type 2
        • GM1 Type 2A – Late-infantile
        • GM1 Type 2B – Juvenile
      • GM1 Type 3 – Adult
    • Getting a Diagnosis
      • GM1 Diagnostic Testing Guide
      • Anti-GM1 Antibodies vs. GM1 Gangliosidosis
      • Newborn Screening for GM1
  • Research
    • Participate in Research
      • Join the GM1 Matrix (Patient Portal)
      • GM1 Biobank
    • Learn About GM1 Research
      • Enzyme Replacement Therapy
      • Research News
      • Cure GM1 Publications
      • GLB1 Variant Catalog (Gene Mutation Database)
    • Guides
      • GM1 Clinical Trials Guide
      • Miglustat for Families
    • For Researchers
      • Grants Overhead Policy
    • Patient Voice at the FDA
      • Patient-Focused Drug Development (PFDD) Meeting
      • Voice of the Patient Report
  • Ways to Give
    • Give
      • Donate Now
    • Fundraise for Cure GM1
      • Our Fundraising Manual
      • Do It For GM1
      • Fundraising Ideas
    • Fundraising Platforms
    • Shop
      • Shop and Support Our Cause
      • RaiseRight
      • Walmart Spark Good
    • Advocate
      • Proclaim GM1 Day
      • Buy and Wear Merch
  • About Us
    • Our Mission
    • Our Team
    • Our Advisors
    • Our Impact
    • Print A Handout
    • Financial Transparency