This month, our hearts are heavy as we said goodbye to another precious child, sweet Daxton, who passed away just before his fourth birthday. The heartbreaking reality is that most children with GM1 won’t see their fifth birthday—an unimaginable burden that no family should ever have to carry. We cannot and will not remain invisible in the face of this devastating disease.
Daxton’s story, by his mother “Daxton was one of a kind, and we miss him…
This month brought exciting advances with the announcement of the first successful personalized CRISPR gene editing treatment for a baby with a rare disease. Many have asked about the implications for GM1. This personalized treatment developed for CPS1 deficiency addresses a different condition than GM1.
Fiona’s story, by her father “Parenting, I learned, is about loving my child today.“ How…
Kiaan’s story, by his mother “I wish people understood that rare doesn’t mean less real“…
As May begins, we’re filled with anticipation for GM1 Awareness Day on May 23rd. This is a month-long effort to shine a light on GM1 gangliosidosis and the remarkable community that surrounds it. We’ve submitted 12 proclamation requests to officials across the country.
Peyton Claire’s story, by her mom “The light she has brought into our lives has…
Ten years ago this month, on April 17, 2015, the U.S. government approved the Cure GM1 Foundation to be the first and only 501(c)(3) entirely dedicated to GM1 gangliosidosis research, drug development and awareness. Over the course of a decade, our efforts have grown significantly. What began as a more personal search for hope became a global movement that has transformed the landscape for this rare disease.
Carter’s story, by his mother “Carter Michael was diagnosed with GM1. He was our precious…
Help us make history by getting May 23rd, 2025 officially recognized as GM1 Gangliosidosis Awareness Day in your state! We’ve prepared all the materials you need – proclamation requests, supporting documents, and step-by-step guidance. Many states require submissions months in advance, so we need to start acting now!