DIPG/DIPT Discussion

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A searchable blog on DIPG research, DIPG news, recent publications, DIPG Foundations, DIPG researchers, clinical trials as well as other issues relating to Diffuse Intrinsic Pontine Tumors- both Diffuse Intrinsic Pontine Gliomas (DIPGs) and Atypical Pontine Lesions (APLs).

For parents, family and friends of children with DIPG looking for information and connection to others dealing with DIPG please check the buttons on the right hand side for resources.

Wednesday, April 3, 2013

Dana Farber DIPG Research Receives a Half Million Dollars

Mikey loved baseball and the New York Yankees, the Doobie Brothers and his dog named Cody.   On Mikey's 11th birthday, January 6, 2008, life as this family knew it ceased to exist.   They first heard the letters- DIPG.  After radiation and a radiosensitizer trial ( Motexafin Gadolinium), his tumor shrank about 85% by April; but byAugust, he started to have right sided numbness, problems walking and difficulty swallowing.     Mikey Czech died on September 7, 2008.

In Mikey's memory, the Stephen J Czech family founded the Mikey Czech foundation with a mission  to establish a leading neuro-oncology translational research laboratory, raise awareness of DIPG, fund research and cure pediatric brain tumors.

In their search to find research trying to cure DIPG, they found a physician, Mark Kieran MD, PhD, completely frustrated at the lack of prognostic change for DIPG in 30 years and a desire to try a new approach.   Biopsies were essentially stopped in the early 1990s before it was even possible to study tumor molecular biology and now seemed to be the right time to take advantage of all the knowledge gained in neurosurgical technique, cancer pharmacology and tumor molecular biology to try to make a difference for DIPG kids.

Dogma doesn't change easily.  For year, Dr Kieran challenged his colleagues on this front.   Little by little others came to the same perspective.  In December 2012, a multi-institutional clinical trial with molecularly determined treatment for the newly diagnosed child with DIPG commenced at Boston Children's.   Today, five other institutions (Lurie Children's in Chicago, Johns Hopkins,  Seattle Children's, Cook Children's in Texas and Washington University in St Louis) also have this trial open.
Watch Dr Kieran discuss a one minute presentation on DIPG research  (open in a different window)

This trial faced other difficulties as well- in particular, funding.   This trial is using already known drugs  so isn't a trial that would be funded by a pharmaceutical company.   It was up to private funding to make this happen.   Mikey Czech Foundation has been a big part of this- and with the donation of a half million dollars today continues to be a sustained supporter of Dana Farber's leading edge work.

One should note that the Boston researchers have not been sitting around waiting for the trial to start.   Biospies have been happening for years in France.  With the financial backing of these foundations,  the researchers in France and Boston collaborated to look at 20 newly diagnosed DIPG specimens- before they could be changed by radiation and chemotherapy.  Here is a link to the abstract published last year.

In this fight we will take Mikey's motto:

"Never, Never, Never Give Up!"

Note- I am aware of several organizations that have come together to fund this innovative research- The Zach Carson DIPG Fund, the Ellie Kavalieros DIPG Fund, The Prayers From Maria Foundation, Children's Hospital of Los Angeles Imaging Center, The Pediatric Brain TUmor Research and Clinical Fund at Dana-Farber Cancer Institute,Stop and Shop Pediatric Brain Tumor Research Fund and Hope for Caroline

The Mikey Czech Foundaiton Contributes $500,000 to DIPG Research at Dana-Farber Cancer Institute-Harvard Medical School (2013)

The Mikey Czech Foundation Funds New Hope for Cancer Research (2012)

Molecularly Determined Treatment of Diffuse Intrinsic Pontine Gliomas (DIPG)

Mikey Czech Foundation