The Science Is Rewriting What We Thought Was Set For years, many in our community quietly carried a belief we didn’t want to hold: that if a milestone was missed, it was gone forever. We didn’t accept it. But without proof, hope was often all we had. Then came a moment that changed something. While watching CNBC Cures, those of us tuned in heard Dr. Stan Crooke say something we haven’t been able to shake: “I was taught that for developmental delays, if you missed a milestone,

When I'm home, I'm in the bunker — tactical, calculated, doing whatever it takes. There isn't room for feelings. There's only the next problem to solve. But when I step away, they find me. And right now, I'm carrying a lot.

On Rare Disease Day 2026, Jill Hawkins shares why rare disease research is closer than ever to life-changing treatments for families impacted by FAM177A1.

Discover the groundbreaking tadpole model revolutionizing FAM177A1 research. Learn how our tadpole model is paving the way for new treatments!

This end-of-year giving season, we are sharing the powerful role that our community plays in pushing research forward to help our FAM FRNDs.

The circle of support for every child with FAM grows more and more and each year. As we enter the season of giving and gratitude, we are thankful for our circle.

Drug repurposing for rare disease opens up pathways to faster treatments for children with FRND "FAM" Disorder.

We are thrilled to be selected by CURE Epilepsy as co-funding partners for this new rare disease funding opportunity, the Rare Epilepsy Partnership Award!

Letter from our FAM177A1 Founder about our recent Dock Hop and how joy is part of the cure.