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Home / Blog - Page 14

Blog

Gui’s Story

January 14, 2019November 26, 2023

From Gui’s Mother “The value of things is not in the time they last, but…

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Reece’s Story

January 14, 2019November 26, 2023

From Reece’s Father Reece Lee William Wells Reece was diagnosed in March 1994 by Dr…

Read More Reece’s StoryContinue

Joey’s Story

January 14, 2019November 26, 2023

From Joey’s Father Josiah (Joey) was born on March 2, 2014, a perfectly healthy baby…

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Augusto’s Story

January 14, 2019November 26, 2023

From Augusto’s Father (sent prior to Augusto’s death) My son’s name is Augusto Barreiros Ribeiro,…

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Rayan’s Story

January 14, 2019November 26, 2023

From Rayan’s Mother My son’s name is Rayan. He was born Tuesday, January 13, 2015…

Read More Rayan’s StoryContinue

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…

Read More Maykel’s StoryContinue

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…

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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…

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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