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The Mikey Czech Foundation Contributes $500,000 To DIPG Research At Dana-Farber Cancer Institute - Harvard Medical School

NEW CANAAN, Conn., April 2, 2013 /PRNewswire/ -- The Mikey Czech Foundation, Inc. (the "Foundation", www.mikeyczech.org) a 501 (c)(3) non-profit foundation established by the Stephen J. Czech family to finance medical research for pediatric brain tumors, announced a $500,000 gift to the Dana-Farber Cancer Institute's Pediatric Neuro-Oncology Center, headed by Dr. Mark W. Kieran, MD, PhD, and located in Boston, Massachusetts. The proceeds of the gift are designed to further the research and development of remedies for Diffuse Intrinsic Pontine Glioma ("DIPG") pediatric brain tumors, the type of tumor that claimed the life of James Michael "Mikey" Czech in 2008 at age 11.

DIPG brain stem tumors affect the cranial nerves of children, ages 3 – 16 years old, 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 currently 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 & Co-Founder of The Mikey Czech 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, CT. 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," said Dr. Mark W. Kieran, MD, PhD, director of Pediatric Neuro-Oncology at Dana-Farber Cancer Institute.

About The Mikey Czech Foundation: The Mikey Czech Foundation, Inc. (the "Foundation") is a 501(c)(3) non-profit foundation established by Mikey's family to finance medical research for pediatric brain tumors, including Diffuse Intrinsic Pontine Glioma ("DIPG") pediatric brainstem tumors. DIPG brain stem tumors are extremely rare.  Approximately 150-200 cases per year are reported nationwide, which unfortunately, relegates this form of cancer to "orphan" status within the medical research community, as too few children develop these type of brain tumors to warrant the necessary investment of scarce medical research dollars to find a cure. The Foundation will approve grants to support research at healthcare, education and medical research facilities throughout the United States to assist research in this area.

About Diffuse Intrinsic Pontine Glioma ("DIPG") brain stem tumors affect the cranial nerves, causing symptoms related to the nerves that supply the muscles of the eye and face, and muscles involved in swallowing. These 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.

Symptoms usually worsen rapidly because the tumor is rapidly growing. The patient's symptoms often improve dramatically during or after six weeks of radiation. Unfortunately, problems usually recur after six to nine months, and progress rapidly. Survival past 12 to 14 months is uncommon, and new approaches to treating these tumors are urgently needed.

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