Cure GM1 Foundation

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Cure GM1 Foundation The Cure GM1 Foundation is dedicated to directly funding research for a cure for GM1 Gangliosidosis.

Awareness -> Funding -> Hope
Donate to Save Children: https://www.curegm1.org/donate
The only 501(c)(3) entirely dedicated to GM1, Founded by families impacted by GM1 gangliosidosis, a fatal disease that primarily impacts children.

🧬 Big questions require deep thinking, and your perspective matters.The research team at UCSF wants to know: What do you...
10/10/2026

🧬 Big questions require deep thinking, and your perspective matters.
The research team at UCSF wants to know: What do you think about prenatal gene therapy for GM1 gangliosidosis?

🗣️ The UCSF research team wants to hear directly from you.
To participate in this vital survey:

📲 visit: https://redcap.ucsf.edu/surveys/?s=LEDRWK7AJXHAMLNX
📞 Or call: 1-800-RX-FETUS
📧 Or email the research team: [email protected], [email protected]

Share this post to help us reach more families.

Did you attend the International GM1 Community Conference? We want to hear from you! 🗣️💚Your feedback helps us shape fut...
10/09/2026

Did you attend the International GM1 Community Conference? We want to hear from you! 🗣️💚

Your feedback helps us shape future events, resources, and community initiatives. Taking our post-conference survey only takes a few minutes, but it makes a huge impact!

📲 How to share your thoughts:

Scan the QR code in the graphic above
Click the link in our bio / below: https://form.jotform.com/262516194902054

Thank you for helping us make our next event even better!

Does your genetic report say GLB1 is linked to both GM1 gangliosidosis and Morquio B? That line can be scary to read. In...
10/09/2026

Does your genetic report say GLB1 is linked to both GM1 gangliosidosis and Morquio B? That line can be scary to read. In almost every case, it does not mean two diseases.

GLB1 is one gene that makes one enzyme, beta-galactosidase. That enzyme has two cleanup jobs, one in the brain and one in bone and cartilage. Depending on the exact gene changes, a person lands at one point on a spectrum that runs from GM1 to Morquio B. Your report names both conditions because it is describing the gene, not giving you two diagnoses.

Swipe through for four things to look for on your own GLB1 report. Then read the full guide, medically reviewed by David Weinstein, M.D., M.M.Sc.: https://www.curegm1.org/glb1-gm1-morquio-b-do-i-have-both-diseases/

If your report leaves you unsure, you are not alone. Bring it to your genetics or metabolic team, and reach out to the Cure GM1 community for support.

For education and support. Not medical advice.

Milo died of infantile GM1 gangliosidosis on July 20, 2026. He was 21 months old.GM1 took his posture, his sight, and th...
10/08/2026

Milo died of infantile GM1 gangliosidosis on July 20, 2026. He was 21 months old.

GM1 took his posture, his sight, and the movement in his arms and legs. But until his last days, Milo knew his parents' voices, and he smiled.

His mom shared his story so we can remember the joy he brought to everyone who met him. You can read it in English and in Spanish.

Read Milo's story at curegm1.org/milos-story (link in bio).

On October 7, we remember Daxton on his first angelversary. This day is also his mother's birthday. We hold her and thei...
10/07/2026

On October 7, we remember Daxton on his first angelversary. This day is also his mother's birthday. We hold her and their entire family close, remembering her little boy and honoring her, too.

Daxton loved his siblings. They only had to look at him to make him laugh. His family remembers his giggles, his perfect smirk, and the peace they felt simply being with him.

GM1 took Daxton's life at just 2 years old. His family surrounded him with love through his final breath. That love continues.

His mother wrote, "I would choose him in every lifetime."

To Daxton's mom, we are thinking of you on your birthday. There is no expectation for how you should feel today. We hope you feel the love of a community that remembers your son and is here for you.

READ: https://www.curegm1.org/daxtons-story-2

Forever loved. Forever 2.

The October edition of The Catalyst is live! 🎃💜We’re heading into October inspired by what we accomplished together last...
10/06/2026

The October edition of The Catalyst is live! 🎃💜
We’re heading into October inspired by what we accomplished together last month and energized by our annual conference.

Swipe through for a preview, then head to https://www.curegm1.org/october-2026-cure-gm1-catalyst/ for the full newsletter and all featured links!

Today we celebrate Denisa and the love, courage, and joy that surround her. May her birthday be filled with gentle momen...
10/05/2026

Today we celebrate Denisa and the love, courage, and joy that surround her. May her birthday be filled with gentle moments, happy memories, and the warmth of family. 💙
Happy Birthday, Denisa! Your strength and beautiful spirit inspire the GM1 community every day.

October is National Physical Therapy Month, and we want to celebrate the incredible physical therapists who are a corner...
10/05/2026

October is National Physical Therapy Month, and we want to celebrate the incredible physical therapists who are a cornerstone of care for our GM1 community!

These dedicated professionals help children with GM1 keep moving, maintain strength, and navigate daily life with greater comfort and independence. Their work brings so much hope and support to families. Thank you to every PT making a difference!

There are so many moving parts to planning our conference, even if it was a virtual event this year. We are so thankful...
10/03/2026

There are so many moving parts to planning our conference, even if it was a virtual event this year. We are so thankful to our sponsors and the entire community for making this event possible.
THANK YOU!

"The International GM1 Community Conference is currently underway! 💙 So much hard work, care, and preparation went into ...
10/02/2026

"The International GM1 Community Conference is currently underway! 💙 So much hard work, care, and preparation went into bringing this incredible event to life. A massive thank you to all of our incredible 2026 speakers for sharing their time, knowledge, and dedication with our community today. A huge thank you to all of our sponsors for their vital support of this conference and the GM1 community."

Address

PO Box 6890
Albany, CA
94706

Telephone

+15103062460

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