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Home / Stories - Page 5

Stories

Fatima and Sultan

June 5, 2019November 14, 2023

From Sultan and Fatima’s mother: I am Sultan Ali and Fatima Shoaib Ali’s mother.  …

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Eva’s Story

May 29, 2019November 26, 2023

Eva Maria 15.01.16-31.05.19

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Vitto’s Story

March 3, 2019November 26, 2023

Vitto’s Story from his family He was born on May 22, 2018 at 4AM in…

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Leonor’s Story

February 26, 2019November 26, 2023

Hello I am Sao Piteira and we are from Portugal.  I am the Leonor’s mother…

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Brayden’s Story

February 5, 2019November 26, 2023

From Brayden’s Mom: Brayden was born on November 16, 2017 First Symptoms On Tuesday Feb…

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Joey and Oliver’s Story

February 1, 2019November 26, 2023

Joey, diagnosed with Juvenile GM1 on April 21, 2017 Oliver, asymptomatic, but diagnosed with Juvenile…

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Hampus, Julia, and Isabella’s Story

January 27, 2019November 26, 2023

From Hampus, Julia and Isabella’s Dad This is Hampus, Julia and Isabella. Hampus was born…

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Anna Laura’s Story

January 26, 2019November 26, 2023

From Carla, Anna Laura’s Mother: Hi, I’m Carla,  Anna Laura’s mother.  Anna Laura is also…

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Hannah’s Story

January 22, 2019November 26, 2023

From Hannah’s Mother: We miss our little angel! We are writing our little girl’s story…

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Sofia’s Story

January 20, 2019November 14, 2023

From Sofia’s Mother: My daughter Sofia, 19 months.  Unfortunately, she lost her battle against GM1…

Read More Sofia’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