Cure GM1 Foundation

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.

02/28/2026

NEW Rare Disease Day coverage of GM1 and Kiaan’s story! Watch below.

“Our little boy has a big smile, an even bigger heart, and we’re on a mission to help him and others like him keep shining.” -Kiaan’s mom

https://www.nbcsandiego.com/video/news/local/boy-from-carlsbad-fighting-rare-disease/3987173/
GIVE: https://www.gofundme.com/f/donate-to-support-cure-gm1-foundation
P.S. The NIH runs the IV AAV9 trial

02/28/2026

Today is Rare Disease Day
Knowing the facts matters. Awareness leads to understanding. Understanding leads to action.
Take a moment today to learn about GM1 and other rare diseases. Start conversations. Share.
MORE: curegm1.org/about-gm1

02/28/2026

Important Rare Disease Day coverage of GM1 and Kiaan's story! Watch and share.

“Our little boy has a big smile, an even bigger heart, and we’re on a mission to help him and others like him keep shining.” -Kiaan's mom

NEWS: https://tinyurl.com/ytcs8hyw
GIVE: https://tinyurl.com/mryd4hsr
WATCH: https://youtu.be/U-nnHHrFq-g?si=iQm0wjO953EdIcqV

P.S. The NIH runs the IV AAV9 trial

Rare Disease Day coverage of GM1 and Kiaan's story from San DiegoDonate to help children who are dying due to GM1 now.“Our little boy has a big smile, an e...

02/28/2026

Today on Rare Disease Day, we stand with the children and all families affected by GM1 gangliosidosis.

GM1 is rare, but the need for awareness, research, and support is urgent. Every voice shared, every dollar donated, and every conversation started brings us one step closer to treatment. Join us. Advocate. Give. Share.

LEARN: curegm1.org/about-gm1
GIVE: curegm1.org/donate

02/27/2026

For Rare Disease month and her 18th birthday, we’re not asking for material items. We’re asking for action and hope. Treatments can change and save lives. No child should have to suffer and die when possible treatments are known.
Please donate to support urgent research and drug development so that together, we can save lives as soon as humanly possible.
Give today. Share today. Help change the future. You can help.
READ MORE: curegm1.org/kron4iris
GIVE: https://givebutter.com/SweetIris
WATCH: https://youtu.be/Thgwr8Grmy0?si=-zDLIz53vY9jkL7x

02/27/2026

NEW Rare Disease Day coverage of GM1 and Kiaan's story! Watch below.

“Our little boy has a big smile, an even bigger heart, and we’re on a mission to help him and others like him keep shining.” -Kiaan's mom

https://www.nbcsandiego.com/video/news/local/boy-from-carlsbad-fighting-rare-disease/3987173/
GIVE: https://www.gofundme.com/f/donate-to-support-cure-gm1-foundation
P.S. The NIH runs the IV AAV9 trial

A family from Carlsbad is looking to raise awareness after their young son was diagnosed with a rare genetic disorder. They tell NBC 7's Todd Strain why they're not giving up hope for a cure.

02/27/2026

Rare Disease Day is tomorrow. Please take a moment to read these stories.

Children and families living with rare diseases aren’t defined by diagnoses, they’re people first. They navigate doctor visits, uncertainty, and daily challenges most of us never see, all while building routines, celebrating milestones, and loving fiercely.

MORE: curegm1.org/stories


Sweet Iris Cure Kinley & Kennedy A Cure for Violet

02/26/2026

For Rare Disease month and her 18th birthday, we’re not asking for material items. We’re asking for action and hope. Treatments can change and save lives. No child should have to suffer and die when possible treatments are known.

Please donate to support urgent research and drug development so that together, we can save lives as soon as humanly possible.

Give today. Share today. Help change the future. You can help.

READ MORE: curegm1.org/kron4iris
GIVE: https://givebutter.com/SweetIris
WATCH: https://youtu.be/Thgwr8Grmy0?si=-zDLIz53vY9jkL7x

KRON4's Philippe Djegal reportshttps://www.kron4.com/