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Meet the team

On Thursday, April 18th, we were invited to CBS studios in New York to meet members of the team responsible for Brain Tumor Research at the Children's Hospital of Philadelphia (CHOP) and to receive an update on their progress to date. We thought you might like to meet them also.

Phillip B. Storm Jr. M.D. Adam C. Resnick Ph.D Peter C. Phillips M.D. Tom Curren Ph.D

Phillip B. Storm Jr. M.D.

Adam C. Resnick Ph.D

Peter C. Phillips M.D.

Tom Curren Ph.D

Incoming Chief of Neurosurgery

Research scientist in Neuro-Onchology

Director, Pediatric Neuro-Onchology Program

Deputy Scientific Director

In addition to meeting the doctors, we were introduced to representatives of other fund raising groups who support this important work.

Dr. Phillips, who incidentally was Christopher's Neuro-Onchologist, explained that treatment for pediatric brain tumors has made very little progress in the last 30 years. Brain tumors are now the leading cause of pediatric cancer deaths largely due to advances made in the treatment of other pediatric cancers. The treatment for brain tumors is basically surgery, radiation and chemotherapy. Chemotherapy regimes are essentially trial and error based on results in adults and the results are unpredictable in children. Children that survive their tumors often suffer side effects from the treatment such as muscle weakness/paralysis, learning disabilities, hearing/vision loss and growth problems. It is clearly time to look at brain tumor treatment in a different way.

In order to develop effective treatments it is vital to understand what happens in cancer cells at the genetic level. This is where the Childhood Brain Tumor Tissue Consortium (CBTTC) comes in. It is a collaborative effort between multiple world renowned children's hospitals to collect tumor samples, gene map them, combine them with clinical treatment data and provide the results openly to any researcher that wants them. At the time of writing, the CBTTC has amassed approximately 1,000 samples which includes Christopher's tumor.

Dr. Resnick described advances that are already being made as a result of the CBTTC. One particular discovery is centered around a mutation in a gene called BRAF which occurs in a type of tumor called an astrocytoma. This gene also mutates in a form of melanoma in adults and an effective drug has been developed for it. However, when the drug was used on brain tumor tissue it caused the tumor to grow more quickly. The researchers worked with the drug company to discover why this occurred and together they came up with a new variant of the drug that can actually slow down and reverse tumor growth in this specific type of tumor. They are now moving toward a clinical trial. They were very fortunate to identify a gene for which there is already a treatment; many of the genes involved in brain tumors do not yet have effective treatments and so there is still much work to be done.

Dr. Storm is one of the leading pediatric brain surgeons in the world, who incidentally performed Christopher's tumor biopsy. He said  "This is the future of brain tumor treatment, not surgery, much as it pains me to say it!"

The doctors explained our role in this work. This kind of research is expensive. Worse, it is difficult to fund because there are so many other diseases that aflict much larger numbers of patients. It is the job of foundations like ours to not only raise funds, but to make people aware of the important work being done here. The doctors stressed that every penny we send them is used entirely for research, it does not get used for admin or for paying for events such as this one. We ARE making a difference and maybe in the not too distant future, brain tumors will be preventable or at least curable.

For more information on the work being done with the BRAF gene in astrocytomas, see this article on the CHOP web site http://www.research.chop.edu/blog/genetic-study-suggests-fine-tuning-drugs-for-pediatric-brain-tumors/