The Mikey Czech Foundation, Inc. (the "Foundation", www.mikeyczech.org) a 501(c)(3) non-profit foundation established by Stephen J. and Jennifer L. Czech to finance medical research for pediatric brain tumors, announced a $1,000,000 gift to Pediatric Medical Neuro-Oncology at Dana-Farber, headed by Mark W. Kieran, MD, PhD, and located in Boston, Massachusetts. 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 – 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 their ability to swallow and breathe. Notwithstanding their physical deterioration, the children maintain their mental faculties and are fully cognizant of what is happening to them. 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.
"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. 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."
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, CT 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, Mr. Czech contributes a percentage of his personal income to DIPG research.
"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 Mark W. Kieran, MD, PhD, 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, MD, President and CEO of Dana-Farber Cancer Institute.
About The Mikey Czech Foundation: The Mikey Czech...
(All Rights Reserved)