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Dream Team Assembled to Fight Pediatric Brain Tumors

By Howard Ludwig | January 18, 2016 7:56am | Updated on January 19, 2016 8:37am
 A group of six doctors and researchers from the Ann & Robert H. Lurie Children's Hospital of Chicago and Northwestern Medicine have teamed in an effort to combat pediatric brain tumors. They include (top row from left) Dr. Rishi Lulla, Dr. Rintaro Hashizume, Dr. Alexander Stegh, (bottom row from left) Dr. Amanda Saratsis, Dr. C. David James and Dr. Ali Shilatifard.
A group of six doctors and researchers from the Ann & Robert H. Lurie Children's Hospital of Chicago and Northwestern Medicine have teamed in an effort to combat pediatric brain tumors. They include (top row from left) Dr. Rishi Lulla, Dr. Rintaro Hashizume, Dr. Alexander Stegh, (bottom row from left) Dr. Amanda Saratsis, Dr. C. David James and Dr. Ali Shilatifard.
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BEVERLY — Amy McNicholas' determination to cure pediatric brain tumors hasn't let up in the years since the disease claimed her son, John.

The North Beverly mother's 15-year-old boy was diagnosed with a malignant brain tumor on March 31, 2010, and died 10 months later. The John McNicholas Pediatric Brain Tumor Foundation was founded in the wake of his tragic death.

The foundation — commonly known throughout the neighborhood on the Far Southwest Side as Live Like John — donated $500,000 on Dec. 1 to the Ann & Robert H. Lurie Children's Hospital of Chicago.

The donation to the Streeterville hospital has paved the way for a group of doctors and researchers from Lurie's Hospital and Northwestern Medicine to collaborate on a project Amy McNicholas believes will lead to better treatment or perhaps a cure to the disease that claimed her son.

 John McNicholas died 10 months after being diagnosed with a brain tumor. His parents started the John McNicholas Pediatric Brain Tumor Foundation, also known as Live Like John, following his death.
John McNicholas died 10 months after being diagnosed with a brain tumor. His parents started the John McNicholas Pediatric Brain Tumor Foundation, also known as Live Like John, following his death.
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"We kind of call it the dream team," McNicholas said.

She said the donation was funded with the proceeds from local events such as the Live Like John Softball Tournament at St. Rita High School and the annual Beverly Hills Turkey Trot. Live Like John also hosts series of smaller fundraisers and awareness events called Go Gray in May.

In recent years the foundation has also begun to partner with other groups that have been born from similar tragedies, including Live Like Leah. This charity is named in memory of Leah Anderson, 7, of Norwood Park who died from a malignant brain tumor in December 2012 — approximately a year after it was discovered.

"This is really a disease that has hurt our community. It is not just the story of one boy," said McNicholas, adding that seven children from the 19th Ward have died in the past 12 years from brain tumors.

The latest case is 6-year-old Anthony Pappalas of Mount Greenwood, who was diagnosed with a brain tumor on July 24. Family and friends have since started Anthony's Avengers, a group that raises money for Anthony's medical expenses and helps to raise awareness about the disease.

Despite these heartbreaking stories, McNicholas said little money is directed toward the research and treatment of pediatric brain tumors. She attributed this to the 4,000 children who are diagnosed each year with the disease — a relatively small number.

As a result, pediatric brain tumor patients are left to rely treatment options developed for adults, McNicholas said.

"Children are not adults. They respond differently to medications due to fundamental anatomical, physiological and developmental differences," according to information released from Lurie's Hospital.

The newly-assembled team will counter this common way of thinking with specialists in the pediatric field. The six members all have expertise in complementary areas including gathering specimens, animal modeling, developing treatment, delivery of medication and clinical trials, McNicholas said.

"What is so exciting is that this is all happening under one roof," she said.

The total cost of the two-year research project is $995,500, and McNicholas hopes the foundation named for her late son can make another $500,000 contribution before the effort is complete.

She added that the Chicago hospital is already among the top five places in the nation for the treatment and research of pediatric brain tumors. Depending on the outcome of the latest project, it could assume the top spot, she said.

"This could get us to become the epicenter," she said.

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