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New Canaan-based Czech foundation gives $500,000 to Dana-Farber

Published 11:39 am, Tuesday, April 23, 2013
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The Mikey Czech Foundation Inc., established by the Stephen J. Czech family, of New Canaan, to finance medical research for pediatric brain tumors, has given a $500,000 gift to the Dana-Farber Cancer Institute's Pediatric Neuro-Oncology Center in Boston, headed by Dr. Mark W. Kieran.

The proceeds of the gift are designed to further the research and development of remedies for diffuse intrinsic pontine glioma pediatric brain tumors, the type that claimed the life of James Michael "Mikey" Czech, who was a student at Saxe Middle School, in 2008 at age 11.

DIPG brain stem tumors affect the cranial nerves of children 3 to 16, destroying the nerves that supply the muscles of the eye and face and muscles involved in swallowing. Symptoms include double vision, inability to close the eyelids completely, "drooping" on one side of the face, and difficulty chewing and swallowing. The tumor also affects the "long tracks" of the brain, with resultant weakness of the arms or legs and difficulty with speech and walking. As the tumor grows, children initially lose their ability to use their limbs. Thereafter, they sequentially lose control of their bowels, hearing, vision and their ability to swallow and breathe. Notwithstanding their physical deterioration, the children maintain their mental faculties, are fully cognizant of what is happening to them, and experience pain comparable to that of being skinned alive. Survival past 12 to 14 months is uncommon, and new approaches to treating these tumors are urgently needed, as no remedies exist to treat DIPGs.

"The assets required to cure DIPGs consist of: a) a sustainable funding source; b) world-class neuro-oncologists; and c) state-of-the-art research facilities," said Steve Czech, Mikey's father and chairman and co-founder of the foundation. "We intend to be the sustainable funding source and we believe that Dr. Kieran, his colleagues and Dana-Farber represent the `best in class' with respect to pediatric neuro-oncology research and state-of-the-art research facilities. It is our hope that this gift will be the first in a series of gifts, comparable or larger in size, designed to eradicate this heinous disease."

In addition to his efforts with the foundation, Czech is the managing partner and chief investment officer of Czech Asset Management, L.P., a credit-focused alternative investment manager based in Greenwich. In an effort to establish a sustainable funding source for DIPG research, Czech contributes a percentage of his investment profits each year to DIPG research.

"Funding from the Mikey Czech Foundation is critical because it will allow us to conduct research to define the underlying molecular changes in DIPG that have previously made these tumors so resistant to therapy," Kieran said.

For information, visit www.mikeyczech.org.