Why we’re here

We are brought together by something none of us could have imagined. Though spread across different states, countries, and circumstances, we share the same hope for a better future for the ones we love.

No one is more committed to finding a cure for PKAN than the families living with it and the researchers working toward one.

Each of us has learned different things along the way. We have experiences, knowledge, ideas, and resources that could help one another.

What happens if we all work together? What becomes possible when we share what we know and combine our efforts?

This is a space for us to connect — to share information, inspire each other, give each other hope, and turn our individual efforts into something bigger.