Our journey, your haven
Discover the story behind Handbasket Haven, born from personal experience and a profound commitment to rare disease patients and their families. Learn about our mission to provide support where none existed, and how we're building a community of hope.
The inspiration behind handbasket haven
My grandson Jaden was born with an ultra-rare unnamed genetic condition, a DNM1 R67C variant and Xp22.31 duplication, documented in only two individuals worldwide. Watching him navigate a system that had no name for his condition, no ICD code, no treatment protocol, and no support infrastructure while Missouri tried to institutionalize him drove me to move to Washington State and build what didn't exist.
Our mission: a haven for the unnamed
A previous NORD Ambassador, and with nearly 40 years of advocacy experience, across rare diseases, child welfare, disability rights, and federal policy. Handbasket Haven exists because families like ours have nowhere to turn and because Washington State has no rare disease support infrastructure. We are building it from the ground up.
Who we support, why it matters
Handbasket Haven exists to be the haven Washington State doesn't have — a grassroots resource and advocacy hub ensuring that families navigating rare and unnamed genetic conditions are never left without a name, a community, or a fight in their corner.
"Handbasket haven is a lifeline for families like ours, providing hope and support when we felt completely lost."
A handbasket haven family member