A cause we love
Project Alive: a cure within reach.
Of everything on this site, this is the page we most hope you'll spend two minutes on.
What is Hunter syndrome?
Hunter syndrome (MPS II) is a rare genetic disease that is progressively debilitating and life-limiting, with no cure today. It occurs almost exclusively in boys, roughly 500 in the United States and fewer than 2,000 worldwide.
Because it's so rare, research funding doesn't come easily. That's where families and communities like ours come in.
What Project Alive does
Project Alive is a 501(c)(3) nonprofit founded by families, for families. Since 2011 it has funded promising curative research, advocated for faster and smarter clinical trials, and supported families navigating diagnosis and care, including Hunter Health, a care-coordination program that pairs families with a dedicated coordinator.
Why us, why this?
We make silly, joyful videos about noodles and boba, and we get to do that because we're healthy enough to. Not every family gets that luck. Project Alive fights for kids who deserve every ordinary day we take for granted, and the science for a cure is genuinely close. Small communities can move rare-disease research in a way that big-charity math can't. That's a fight we want our corner of the internet in.
How to help
Three ways, all of them count.
Donate directly
Every dollar goes to a lean, family-run nonprofit. Donate at projectalive.org.
projectalive.org ↗ DoVolunteer
Skills, time, fundraising legs. Rare-disease nonprofits run on volunteers.
Volunteer info ↗ ShareSpread the word
Awareness is oxygen for rare diseases. Learn the story, then tell one person.
About Project Alive ↗We have no financial relationship with Project Alive. We just believe in the mission.