Cure GM1 Foundation

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.

We are sending love to Marley on her ninth birthday on the 9th!READ MORE: curegm1.org/marleys-story A Cure for M...
03/09/2026

We are sending love to Marley on her ninth birthday on the 9th!

READ MORE: curegm1.org/marleys-story


A Cure for Marley

03/09/2026

Thank you A Cure for Marley for your support! Happy 9th birthday to Marley!

On this International Women’s Day, we honor the caregivers, scientists, medical professionals and changemakers who show ...
03/08/2026

On this International Women’s Day, we honor the caregivers, scientists, medical professionals and changemakers who show resilience and courage. Your voices matter, your work matters, and your impact is far-reaching.

A Carlsbad family is sharing the story of their 5-year-old son, Kiaan, who was diagnosed with GM1 gangliosidosis, an ext...
03/07/2026

A Carlsbad family is sharing the story of their 5-year-old son, Kiaan, who was diagnosed with GM1 gangliosidosis, an extremely rare genetic disorder that progressively damages nerve cells.

READ MORE: https://tinyurl.com/mrxx7hse

Kiaan recently began a gene therapy trial through the National Institutes of Health (NIH) offering hope for families facing rare diseases.

“We are sharing Kiaan’s story so no child is forgotten simply because their condition is rare,” said Manmeet Patil, Kiaan’s father.

GM1 gangliosidosis is caused by mutations in the GLB1 gene, which normally produces an enzyme called beta-galactosidase. This enzyme helps break down fatty substances known as gangliosides.

When the enzyme doesn’t work properly, GM1 gangliosides accumulate in nerve cells in the brain and spinal cord. The buildup can lead to progressive neurological damage, including developmental delays, loss of previously learned skills, muscle weakness, difficulty walking, speaking or swallowing, vision or hearing problems and seizures.

"It’s impossible to describe how it feels to look at your child and know what lies ahead. The future we once planned and looked forward to became a timeline we feared," said Varuna Gopalan, Kiaan's mother.

“Loved beyond words, missed beyond measure.”May sweet Ravi rest in heavenly peace.
03/06/2026

“Loved beyond words, missed beyond measure.”

May sweet Ravi rest in heavenly peace.

Daxton was a joyful little boy whose life was tragically cut short by GM1 gangliosidosis, a rare and terminal genetic di...
03/06/2026

Daxton was a joyful little boy whose life was tragically cut short by GM1 gangliosidosis, a rare and terminal genetic disease.

His story reminds us why awareness and research matter so much.

Read Daxton’s story and help bring hope to families fighting GM1:

curegm1.org/daxtons-story-2

Thank you to our amazing community for the incredible submissions to our Rare Disease Day Photo Contest! We were truly m...
03/05/2026

Thank you to our amazing community for the incredible submissions to our Rare Disease Day Photo Contest!

We were truly moved by the creativity, stories, and passion behind every photo shared.

Our March Cure GM1 Catalyst newsletter is here. Catch a quick update on advocacy, research progress, and ways our commun...
03/04/2026

Our March Cure GM1 Catalyst newsletter is here.
Catch a quick update on advocacy, research progress, and ways our community advancing research for GM1.

SUBSCRIBE: curegm1.app.neoncrm.com/np/clients/curegm1/subscribe.jsp
NEWS: curegm1.org/march-2026-cure-gm1-catalyst

The mission of Cure GM1 Foundation is to fund and accelerate research and drug development to advance possible treatment...
03/03/2026

The mission of Cure GM1 Foundation is to fund and accelerate research and drug development to advance possible treatments for GM1 gangliosidosis.

curegm1.org/take-action

Thank you to everyone showed up for Rare Disease Day. Please continue standing with us.For families impacted by GM1, th...
03/02/2026

Thank you to everyone showed up for Rare Disease Day. Please continue standing with us.

For families impacted by GM1, the suffering and urgency for help do not disappear. Children continue to fight for life every single day, and the need for research and treatment remains critical.

LEARN: curegm1.org/about-gm1

Today, Rare Disease Day 2026, we honor our GM1 community members around the world who share the lived experience of faci...
03/01/2026

Today, Rare Disease Day 2026, we honor our GM1 community members around the world who share the lived experience of facing GM1 every single day.

We honor the children who are suffering and dying from this cruel disease.

We honor the families who continue to show up for their children, through grief and pain and frustration ... the caregivers who are buried beneath the weight of emotional and financial stress and would give anything to switch places with their child to end their suffering.

We honor all of those who are working so hard to keep their children as comfortable as they can, and to stay as hopeful as they can, as we race the clock to find effective treatment and, hopefully, one day, a cure.

The weight placed on GM1 families is relentless, but our commitment to fighting GM1 is just as strong. We'll be here long after Rare Disease Day ends, because every single day is Rare Disease Day when your child has this devastating diagnosis.

Thank you.

Address

PO Box 6890
Albany, CA
94706

Telephone

+15103062460

Website

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