Mother’s Grief Transformed into Mission to Raise Awareness & Funding for Brain Tumor Research

In a busy waiting room, she was handed the phone by the receptionist. It was her daughter’s doctor delivering news that no parent ever wants to hear – her nine year old daughter had an inoperable brain tumor. Upon hearing the news, Kristen Gillette sobbed and began to hyperventilate. Months later, after her daughter’s death, she took her grief and transformed it into action.  

Only six months after her daughter’s death in April of 2006, Gillette, a resident of Oceanport, NJ, established the Kortney Rose Foundation which has donated over $378,000 in four years to the brain tumor research program at the Children’s Hospital of Philadelphia (CHOP). She was also instrumental in getting state lawmakers to designate the month of May as Brain Tumor Awareness Month in New Jersey.

Earlier this year, Gillette received news that funding from the Kortney Rose Foundation contributed toward brain tumor research, has yielded important results.

In a letter received in February 2011 from Dr. Peter C. Phillips, M.D., at CHOP, funding from the Kortney Rose Foundation supported a collaborative study involving CHOP and Johns Hopkins Hospital that focused on childhood medulloblastoma tumors.

“Portions of medulloblastoma DNA specimens banked through the CBTTC were completely sequenced by advanced new technologies at Johns Hopkins and at CHOP,” said Phillips in his letter to Gillette.

He said, “We were able to identify new mutations that represent a substantial sub-population of these tumors and have major clinical significance.”

Phillips said the study has been submitted to a major scientific publication and he anticipates its acceptance and publication in late 2011.

Phillips is the Center Hubert JP and Anne Faulkner Schoemaker Chair of Neuro-Oncology, Professor of Neurology and Oncology, and Director of Neuro-Oncology Programs at CHOP.

Gillette said she was thrilled to receive the letter from Phillips in which he concluded by saying, “We are delighted that your support was able to bear fruit so quickly.”

 “I poured all of my grief into this effort and the foundation,” said Gillette.

Gillette is determined to spread the word about this disease that she said doesn’t command the attention of other diseases.  

“It’s imperative to bring awareness to the public to highlight the plight of brain tumor patients and their need for more research funding needed to find better treatments and ultimately cures,” said Gillette. 

She said “Pediatric tumors are the number one Cancer related cause of death in children 19 years old and younger.”

Gillette said, the warning signs for pediatric brain tumors are tough because they are ailments that a child can have for other reasons which include: headaches especially upon waking in the morning or that wake someone up; a change in gait, weakness on one side of the body or balance issues, vomiting, and a sudden crossing of the eyes.

According to Dr. Phillips, There are many different types of brain tumors for children.  None represent a simple majority. 

“For some types, such as medulloblastoma, the most common malignant brain tumor of children, we have made major advances in understanding where these tumors come from, namely the cell of origin, how they develop, and what makes them grow faster,” said Phillips.

“These advances include improvements in our understanding of gene mutations as well as signaling pathways that control these tumors from inside and growth factors that maintain their growth.  For other tumors, such as brainstem gliomas, we have made little or no progress in the past 40 years,” said Phillips. 

He said that to date, there is no chemotherapy that adds to the effectiveness of radiation therapy for these tumors and radiation therapy slows down growth but does not cure tumors.

Phillips also said that the vast majority of brain tumors arise spontaneously and with no clear predisposing factor. Several genetic conditions, including Neurofibromatosis type 1 and type 2 represent substantial predisposition risks for brain tumors and there are clinical as well as genetic tests for these.

“However, genetic tests should be considered only in consultation with an experienced clinician who can explain what the finding mean.  These include Clinical Geneticists, and Clinical Oncologists with expertise in cancer predisposition syndromes,” said Phillips.

Currently there is no reliable test that would give a good indication of who will get a brain tumor, according to Phillips. 

He said, “In general, there is no good reason to get an MRI or a CT scan for the general population in order to screen for brain tumors.” 

“The brains of children have much more cell growth and division than in adults.  Therefore, there are many more ‘opportunities’ for random genetic mistakes to happen as cells develop from immature forms to more mature, differentiated forms,” said Phillips. 

According to Dr. Phillips, based on data from the drawing from the Surveillance, Epidemiology, and End Result NIH Databank (SEER), 3500 children annually are diagnosed with a brain tumor.

For Kristen Gillette, the goal is to find a cure. It doesn't matter to her that the disease is not as common as other diseases. When a parent loses a child, statistics are irrelevant.

Gillette said she is not able to deal directly with families with children who have been diagnosed with a brain tumor.

She said, “I can’t go through the pain again. I just can’t. But I can do everything I can to raise money and awareness to find a cure.”

For more information, visit the Web site: http://www.kortneyrosefoundation.org