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Home / Blog - Page 15

Blog

Maykel’s Story

January 14, 2019November 26, 2023

From Maykel’s Mother Maykel Cal Oliveira was born on 12/20/2014.  He was diagnosed with GM1…

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Lily’s Story

January 14, 2019November 26, 2023

From Lily’s Aunt My niece Lily Faith Tinney had a very severe and aggressive form…

Read More Lily’s StoryContinue

Cody’s Story

January 13, 2019November 26, 2023

From Cody’s Mother Our son Cody Butcher is now 3. He was born on the…

Read More Cody’s StoryContinue

Lydia’s Story

January 13, 2019November 26, 2023

From Lydia’s Mother Lydia was born, apparently healthy, a normal pregnancy. She was born with…

Read More Lydia’s StoryContinue

Anisa’s Story

January 13, 2019November 26, 2023

From Anisa’s Mother My last child has  GM1.  I also have two girls and a…

Read More Anisa’s StoryContinue

Armand’s Story

January 13, 2019November 26, 2023

From Armand’s Mother My son Armand Hayes was diagnosed in 2011. We are doing all…

Read More Armand’s StoryContinue

2019 The Jackson Laboratory – Natural History Studies of Two GM1 Mouse Models

January 4, 2019November 14, 2023

Scientific researchers Cat Lutz and Aamir Zuberi at the Rare Disease Center of the Jackson…

Read More 2019 The Jackson Laboratory – Natural History Studies of Two GM1 Mouse ModelsContinue

Florence’s Story

January 3, 2019November 27, 2023

Florence has late infantile GM1. She was diagnosed when she was 2. She has real…

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Sara’s Story

January 3, 2019November 27, 2023

A Message from Sara’s Mother Hello Friends and Families We are an affected family from…

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Maria Eduarda’s Story

January 3, 2019November 27, 2023

Maria Eduarda was born on 07/07/2015.  She was diagnosed at one year of age with…

Read More Maria Eduarda’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
      • See Our Fundraising Ideas
      • Fundraise for CureGM1
        • Use Our Fundraising Manual
        • GoFundMe
        • JustGiving
        • Facebook
      • Used Car Donation
    • Participate in Our Events
      • GM1 Awareness Day
      • Do It for GM1
      • Rare Disease Day
      • 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