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Home / Stories - Page 3

Stories

Strahinja’s Story

August 5, 2022November 14, 2023

Hello, I’m Strahinja, 19 months old from Switzerland. I have two older brothers who are fortunately…

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Theodora’s Story

May 13, 2022January 25, 2024

Theodora was born in October 2021. She is a very happy and smiley baby. She…

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Camden’s Story

May 3, 2022January 3, 2024

Camden is a happy child. He loves people. Hearing certain names lights his face up….

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Sweet Iris’ Story

February 11, 2022December 14, 2023

About Sweet Iris Iris was diagnosed with Juvenile GM1 when she was 5 and a…

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Kinley and Kennedy’s Story

February 1, 2022November 14, 2023

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

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Emily’s Story

February 22, 2021January 25, 2024

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

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Clara’s Story

December 1, 2020November 14, 2023

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

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Cas’ Story

November 23, 2020November 26, 2023

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

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Sofia and Stephanie

August 25, 2020November 26, 2023

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

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Nastya’s Story

July 25, 2020November 26, 2023

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

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  • About GM1 Gangliosidosis
    • About
      • About GM1
      • Disease Overview PDF
      • Clinical Disease Overview Video
      • The Cause
      • Who Gets GM1
      • Incidence of GM1
      • History of GM1
      • Life Expectancy
      • Subtypes of GM1
    • Treatments and Research
      • Advancements and Research
    • If Your Loved One Has GM1
      • Join a Natural History Study
      • Give Samples to the GM1 Biobank
      • Participate in Data Sharing
      • Contact Us
  • How to Help
    • Take Action
    • By Donating
      • Donate
      • Paypal Giving Fund
      • Crypto
      • Contact Us
    • Read and Share Our Stories
      • Community Stories
      • Watch Family Videos
      • Share Your Story
    • For Researchers
      • Grants Overhead Policy
    • By Fundraising
      • Fundraise for CureGM1
      • Use Our Fundraising Manual
      • Fundraise with Charity Miles App
      • See Our Fundraising Ideas
      • Used Car Donation
      • GoFundMe
      • JustGiving
      • Facebook
    • Participate in Our Events
      • Rare Disease Day
      • GM1 Gangliosidosis Awareness Day
      • Move for GM1
      • Annual Conference
    • By Shopping
      • GM1 Store
      • RaiseRight
      • Buy Chocolate
      • eBay
    • Engage with Cure GM1
      • Contact Us
      • Subscribe to the Newsletter
      • Join the Cure GM1 Parents Facebook Group
      • Join the Friends of Cure GM1 Facebook Group
    • Subscribe to Our YouTube Channel
  • What We Do
    • About the Foundation
      • Mission Statement
      • Board Members and Staff
      • Scientific and Business Advisors
      • Informational Flyer
    • Newsletters
      • View Newsletters
      • Subscribe to the Newsletter
    • Advancements / Research
      • Enzyme Replacement Therapy Project
    • Guide Families
      • Message to the Newly Diagnosed
      • Learn about Data Sharing
      • Contact Us / Have questions?
    • Drive Progress and Research
      • FDA Engagement, EL-PFDD
      • Voice of the Patient Report
      • Caregiver Preferences Study