NKH Crusaders was established in June of 2010
NKH Crusaders was established in June 2010 after my son's diagnosis of NKH. We had reached out to Dr. Van Hove to find out why research was not happening. He said he needed funds for research. At that time there was no Specific research program for NKH. Dr. Johan Van Hove out of the University of Colorado is the leading expert on NKH and research. In the past several years we have been excited to see other Hospital and Dr's start their own NKH research programs. The more facilities and people we have working on NKH the faster we can find better treatment options and possible a cure. To date we have The University of Colorado, Notre Dame and Dr. Nick Greene in The UK working on NKH research. We are also happy to announce that in 2017 we can expect Boston Children's Hospital and Dr. Olaf Bodamer to start a NKH research program there.
We continue to work hard to spread awareness for NKH and to raise the much needed funds for NKH research.
We also continue to support families after receiving this diagnosis as well coordinate NKH conferences with Boston Children and Dr. Johan Van Hove , Notre Dame and NKH families across the globe. Our next conference is expected to be in 2018 In Boston Massachusetts.