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Home / Stories - Page 2

Stories

Hampus, Julia, And Isabella’s Story

July 14, 2024February 13, 2025

Hampus, Julia, and Isabella’s Story Their GM1 Stories “It is heartbreaking not knowing what tomorrow…

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Denisa’s Story

May 14, 2024May 22, 2024

DENISA’S STORY My Story “Hi, my name is Dana.  I have a daughter with Juvenile…

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Peyton’s Story

May 10, 2024May 22, 2024

PEYTON’S STORY My Story “It has completely changed our family. We are closer than ever…

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Luke & Isaiah’s Story

May 10, 2024May 10, 2024

LUKE & ISAIAH our Story “Luke and Isaiah faced this horrible disease together, dying just…

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Iris’ Story from Her Brother’s Perspective

February 13, 2024February 18, 2024

As told by Iris’ brother. How has GM1 gangliosidosis affected your life? GM1 Gangliosidosis is…

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Marley’s Story

February 10, 2024February 27, 2024

How did you feel when your child received a diagnosis of GM1? Early on we…

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Jessica’s Story

February 6, 2024February 6, 2024

How did you feel when you received a diagnosis of GM1? When I got my…

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Violet’s Story

December 7, 2023December 7, 2023

The Law Family announces with the sweetest sorrow, the passing of their beloved daughter, Violet…

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Asia’s Story

May 2, 2023November 27, 2023

This is the story of Asia, a little princess born on December 6, 2020. Asia…

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Luigi’s story

April 23, 2023January 9, 2024

Hi friends, my name is Luigi. I’m Italian, and I’ll be 3 in October. Unfortunately…

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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
      • Resources For GM1 Families
      • Learn About Data Sharing
      • Contact Us / Have Questions?
    • Drive Progress and Research
      • FDA Engagement, EL-PFDD
      • Voice of the Patient Report
      • Caregiver Preferences Study