In order to create a unified front to tackle the funding for NKH, the Leadership Board is comprised of parents, caregivers, and advocates for NKH patients. Our goal is fund the University of Notre Dame and Colorado University in their research for NKH treatment. Meeting virtually every other month, we find creative ways to collaborate in an effort to raise the necessary funds for these massive research projects.
The members of the NKH Leadership board includes several families who have created NKH organizations in hopes of empowering others who have received this devastating diagnoses.
You are not alone in this.