About Us

We are an all volunteer non-profit organization dedicated to assisting the Spoonbill Foundation to find innovative treatments…and hopefully a cure to the terrible disease of PKAN. Most specifically, we are racing the clock to raise funds to administer a clinical trial of the new breakthrough treatment “CoA-Z” to the 200+ children with PKAN throughout the United States.

Our Mission

To raise $2,000,000 to fund the administration of clinical trial of a new breakthrough treatment for PKAN to all of the 200+ kids across the country. This treatment has the promise to save these kid’s lives.

Our Team

Our team members are all volunteers who donate their time and money to solve the problem of PKAN.

Our Collaborators: Spoonbill Foundation

Their Mission: To discover, develop, and deliver therapeutics for PKAN and all NBIA disorders in partnership with the NBIA community as swiftly as possible and at the lowest cost

We are a US-based not-for-profit foundation that is closely affiliated with our Dutch sister organization, Stichting Lepelaar We began as a scientific collaboration and have grown into an ambitious, socially-conscious force to change the landscape of rare disease therapeutics.