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Home / story

story

Fiona’s Story

May 30, 2025June 5, 2025

Fiona’s story, by her father “Parenting, I learned, is about loving my child today.“ How…

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Peyton’s Story

April 9, 2025April 9, 2025

Peyton Claire’s story, by her mom “The light she has brought into our lives has…

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Carter Michael’s Story

March 19, 2025March 19, 2025

Carter’s story, by his mother “Carter Michael was diagnosed with GM1. He was our precious…

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Gael’s Story

February 18, 2025February 18, 2025

Gael’s story, by his mother “Gael was diagnosed with Type 1 infantile GM1 on his…

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Milah’s Story

January 23, 2025June 5, 2025

Milah’s story, by her mother “Milah was diagnosed with GM1 Type 1 at 8 months…

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Ben’s Story

December 26, 2024December 26, 2024

Ben’s story, by his mother “Ben was diagnosed with juvenile GM1 on December 22, 2023,…

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Joaquim and Sofia’s Story

October 18, 2024April 22, 2025

Joaquim and Sofia’s story, by their father “Our current focus is on keeping Joaquim as…

Read More Joaquim and Sofia’s StoryContinue

Lucas’s Story

October 3, 2024October 3, 2024

Lucas’s story, by his mother “Because of GM1, Lucas has not been able to grow…

Read More Lucas’s StoryContinue

Aidan’s Story

August 23, 2024February 13, 2025

Aidan’s story, by his mother “This is my son, Aidan, who was diagnosed with GM1…

Read More Aidan’s StoryContinue

Lingxi’s Story

July 14, 2024February 13, 2025

Lingxi’s GM1 Story, as told by her father Her GM1 Story ” We have been…

Read More Lingxi’s StoryContinue

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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