About Spoonbill Foundation


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.

The Spoonbill Foundation Board consists of:

  • Penny Hogarth (Chair)
  • Susan Hayflick (Secretary Treasurer)
  • Ody Sibon (Member)
  • Hans Hektor (Member)

The Spoonbill Foundation is recognized as a nonprofit organization by the IRS.

IRS Code: Section 501(c)(3)

Tax Identification Number: 81-5080532