About the NKH Leadership Board

Created in October 2019, this board was established to bring together the U.S. families and non-profits who are actively raising money for NKH research. The goal was to create transparency within the NKH community as well as accountability to the board from those who are leading NKH research. The leadership board is currently supporting two U.S. researchers who are working on several different options for a more effective NKH treatment and a cure. The current researchers are Dr. Kasturi Haldar at the University of Notre Dame and Dr. Johan Van Hove at the University of Colorado. The doctors provide quarterly updates as well as a projected budget to the leadership board. The board meets bi-monthly to discuss funding and fundraising ideas, and events.

Joining the NKH Leadership Board is for anyone who is actively raising funds and awareness in the support of NKH Research. Having a non-profit is not required. You must be in attendance to a minimum of three meetings annually. We are open to anyone who is ready to roll up their sleeves and do whatever it takes to end NKH.

The board is comprised of:

NKH Crusaders - The Archibald Family
Nora Jane Foundation - The Almany Family
Fiona and Friends - Mary and John Fitzpatrick
Broydn's Friends - Heidi Leslie
Lucas John Foundation - The Culp Family
Jacqueline Kirby Foundation - Eddie Kirby and Joni See
John Thomas Foundation - Tom Swoboda
Sean Nohelty
Kerry Molina
Michelle and Joe Sarb
Lynda and Patrick Sarb
Jacquline Rhodes
Will Shen
Grace Larkin
Morgan Schmitz
Amber Moore Williams

Join the NKH Leadership Board