The foundation established in memory of a New Canaan boy has made the largest single donation ever toward research into the type of tumor that took his life.
The Mikey Czech Foundation Inc., a non-profit foundation established by Stephen J. and Jennifer L. Czech to finance medical research for pediatric brain tumors, announced on March 31 a $1 million gift to Pediatric Medical Neuro-Oncology at Harvard-Dana-Farber, headed by Dr. Mark W. Kieran and located in Boston, Mass.
The gift is the largest-ever single donor gift dedicated to Diffuse Intrinsic Pontine Glioma research in Dana-Farber’s history. 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 to 16 years old, destroying the nerves that supply the muscles of the eye and face, and muscles involved in swallowing and breathing. 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 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 constant, excruciating pain. Survival past 12 to 14 months is uncommon, and new approaches to treating these tumors are urgently needed as no known effective therapies currently exist to treat DIPGs.
Steve Czech, Mikey’s father and chairman and co-founder of the foundation, said finding a cure will require a sustainable funding source, world-class neuro-oncologists and state-of-the-art research facilities.
“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. This gift is our second of what we hope will be a series of gifts, comparable or larger in size, designed to eradicate this heinous disease,” Steve Czech said in a press release.
“Funding from The Mikey Czech Foundation is critical because it will allow us to continue to conduct research to define the underlying molecular changes in DIPG that have previously made these tumors so resistant to therapy,” said Kieran, director of Pediatric Medical Neuro-Oncology, Dana-Farber Cancer Institute. “These efforts are already having an impact. The first national clinical trial of biopsy of DIPG and molecular classification followed by treatment individualized to the specific aberration in each patient’s tumor (the first such trial in the world) has already been completed. Out of these efforts came the discovery that DIPG occurs as three different variants with unique molecular signatures that have different mutations, some of which were unique to DIPG and unknown in any other cancer. Dana-Farber is now developing targeted therapies against these mutations in the hope that we can finally begin to make a significant impact in the treatment of this disease. All of this effort came from the dedication of patients, their families and foundations, including The Mikey Czech Foundation, and would not have been possible without them.”
“DIPG is a devastating disease for pediatric patients and their families. With The Mikey Czech Foundation’s funding, Dr. Kieran can continue his important research and hopefully one day find a cure for DIPG, said Laurie H. Glimcher, M.D., president and CEO of Dana-Farber Cancer Institute.
In addition to his efforts with the foundation, Steve Czech is the managing partner and chief investment officer of Czech Asset Management, L.P., a credit focused alternative investment manager based in Greenwich with approximately $4.3 billion of committed capital under management and significant co-investment capacity. In an effort to establish a sustainable funding source for DIPG research, Czech contributes a percentage of his personal income to DIPG research.
More information can be found at mikeyczech.org.
Mikey Czech
New Canaan: The Mikey Czech Foundation has given $1 million to the Cancer Institute. Mikey Czech.
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