On New Year’s Eve 2010 our lives took an unimaginable turn: A doctor told us that our seemingly healthy 19-year-old daughter, Elizabeth, had inoperable brain cancer. We were advised to take her home, find palliative care, and expect her to succumb to her disease within the year. Words cannot describe our devastation, despair, and anger. How is it possible in this day, when we send space probes to the edge of the solar system and develop driverless cars, that there can there be no effective treatment options? There was literally no hope—only prayers for a miracle. Read more
Second International Gliomatosis Cerebri Conference
June 22-23, 2017
National Institutes of Health, Washington, DC
We are delighted to announce that planning is now under way for the second International Gliomatosis Cerebri Conference. The first conference, held in Paris in 2015, was generously funded by families dedicated to curing GC; it included scientists, foundations, and families from around the world. That first meeting laid the groundwork for international collaboration to advance GC research, and set a goal for establishing patient and tissue referral centers in London, Heidelberg, and New York.
Many of the families and foundations who attended have held monthly international phone calls and communicate regularly via email and social media, and they are committed to helping fund this next important session. If you are interested in providing support, please make a donation to the CBTP or reach out to the AYJ Fund, Elizabeth’s Hope, or the Joshua Bembo Project in the United States, or Izas la Princesa Guisante (Spain) or Franck un rayon de soleil (France).
They say that life is a highway and its milestones are the years,
And now and then there’s a toll-gate where you buy your way with tears.
—Joyce Kilmer (“Roofs,” 1917)
September is all about milestones, with its back-to-school firsts and the excitement of new beginnings. This year we have a special milestone: After 40+ years in my childhood home, including 14 years raising our family in it, the Andersons have moved! That house was a home base we had only ever planned on expanding, but Hurricane Irene five years ago, then Sandy a year later, was the beginning of the end. We began to mourn our home then, but we never could have imagined what was yet to come. I’ve learned a lot in the past five years about “the best laid plans.” Read more
Thanks to a number of grants and private donations, in July and August the CBTP lab team was joined by several young researchers working on specific projects to advance the field of pediatric neuro-oncology. This “summer sprint” was an unprecedented effort that produced some excellent results.
Umberto Tosi, funded by a POST grant from the Alex’s Lemonade Stand Foundation, worked on a project to improve the measurement of drug delivery to the brain via “theranostic” (therapeutic and diagnostic) agents.
The usual method of determining whether a drug has been successfully delivered is to wait for a clinical response, a “wait-and-see” approach that is neither timely nor precise. If researchers could modify a drug to make it fluorescent—and therefore visible on PET or MRI imaging—they would be able to see in real time whether that drug has reached its target. The key is to make delivery of the drug visible and measurable without reducing its effectiveness. Read more
As many of you probably read about on Facebook, on September 8 we treated the final patient in our Phase I clinical trial of convection-enhanced delivery (CED) for diffuse intrinsic pontine glioma (DIPG). The trial, which had enrolled 27 patients over the past four years, was designed to test the safety of CED as a means of delivering a cancer-fighting drug directly to the site of a DIPG tumor. Four patients received a second infusion, bringing the total number of treatments to 31. Read more
“Exploring the role of inflammation in the malignant transformation of low-grade gliomas.” Journal of Neuroimmunology, 2016 Aug 15;297:132-40. Epub 2016 May 25.
“A novel magnetic resonance imaging segmentation technique for determining diffuse intrinsic pontine glioma tumor volume.” Journal of Neurosurgery, Pediatrics, 2016 Jul 8:1-8. [Epub ahead of print]
“A Novel Methodology for Applying Multivoxel MR Spectroscopy to Evaluate Convection-Enhanced Drug Delivery in Diffuse Intrinsic Pontine Gliomas.” AJNR American Journal of Neuroradiology, 2016 Jul;37(7):1367-73. Epub 2016 Mar 3.
“Gliomatosis cerebri: A consensus summary report from the First International Gliomatosis cerebri Group Meeting, March 26-27, 2015, Paris, France.” Pediatric Blood Cancer, 2016 Jul 28. [Epub ahead of print]
“Convection-Enhanced Delivery for Diffuse Intrinsic Pontine Glioma Treatment.” Current Neuropharmacology, 2016 Jun 13. [Epub ahead of print]
“Clinical Genomics: Challenges and Opportunities.” Critical Reviews in Eukaryotic Gene Expression, 2016;26(2):97-113.
Click on any of the links above to read summaries of these papers on PubMed.com
“You have cancer” are three words no child should ever hear. Most people, however, don’t realize the impact those words have on the people around the child. It was an odd feeling when the word “cancer” was first used around me. My brother, Zachary, was diagnosed with an inoperable brain tumor called DIPG in 2013 and fought for 9 months, passing in March of 2014.
Christian Koehler 7th Annual Lax Tournament
May 21, 2016