Hedge fund manager Stephen J. Czech and his wife, Jennifer, are intent on finding a cure for a rare and deadly form of pediatric cancer that took the life of their son, James Michael, three years ago at the age of 11.
Known as Mikey, he died nine months after being diagnosed with a diffuse intrinsic pontine glioma tumor. Between 150 and 200 children in the U.S. suffer DIPG tumors annually, and Mr. Czech said 100% die within a year of being diagnosed. The Mikey Czech Foundation Inc., New Canaan, Conn., was established to build a world-class neuro-oncology research laboratory and to support research at other U.S. institutions. The foundation has raised $1.5 million for pediatric cancer research, Mr. Czech said in an interview.
The foundation and six other non-profit organizations are jointly funding a clinical trial that will allow neurosurgeons to perform biopsies on DIPG tumors for the first time in the U.S. Surgeons in other countries have successfully biopsied DIPG tumors, and Mr. Czech said he hopes the efforts of the foundation in conjunction with the Broad Institute of Boston, which will analyze the live tissues, will help doctors develop customized treatment plans for each U.S. patient.
Mr. Czech is managing partner and chief investment officer of Czech Asset Management LP, Greenwich, Conn., which manages about $1.1 billion for institutional investors.
Additional funds for continued DIPG research are welcomed via the foundation's website.