Published on in Children's View
When Michael Gustafson was diagnosed with a deadly brain cancer as a child, he faced his fate by trying to live as normal a life as possible. Patti and Al, his parents, describe him as “an affectionate tough guy with a great sense of humor” who scheduled his chemotherapy on weekends so he wouldn’t miss school. When it was clear he wouldn’t survive, Michael hatched what he called his “master plan”: He’d be a tissue donor to further research to help other kids diagnosed with brain cancer. And before his death at age 15, he founded the Swifty Foundation.
The Foundation, run by Patti and Al, is focused on eradicating pediatric brain cancer. Although Michael was not treated at Children’s Hospital of Philadelphia, the Gustafsons found an equally determined partner in the Children’s Brain Tumor Network (CBTN), which CHOP launched in 2011 to unite clinicians, scientists, patients and foundations in their efforts to accelerate research and treatments. The CBTN, driven by CHOP, has grown from four sites to a consortium of 25 hospital partners, each engaged in harnessing the power of data to facilitate discoveries.
“CBTN has demonstrated the need to rebuild our model for research into pediatric brain cancer,” says Phillip “Jay” Storm, MD, Chief of Neurosurgery at CHOP and CBTN principal investigator. “To make the kind of discoveries that will have an impact, the traditional walls that separate institutions and research teams need to come down.”
The Swifty Foundation recently pledged $1.75 million to support the CBTN, and the Gustafsons broadened their impact by partnering with CHOP surgeons and supporters to secure donations to match the Foundation’s commitment. “We are investing to facilitate collaboration between foundations and between researchers,” explain Patti and Al. “Collaboration increases the volume and speed of research. And we are investing to attract other private and public funding sources.”
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To date, the CBTN has enrolled over 3,500 participants and maintains more than 45,000 biospecimens, paired with more than 400 terabytes of data, accessible through cloud-based platforms at no cost to researchers anywhere. Tissue taken from a tumor during a patient’s journey provides materials critical to understanding why the tumor developed and how it reacts to treatment. The cloud-based platforms allow researchers to instantly analyze the data. Without such platforms, it can take an individual an average of six months to download large datasets. The CBTN has supported more than 200 research projects worldwide.
The CBTN’s work has been impressive — but there is much more to accomplish. “Patti and Al Gustafson really identify with the sense of urgency that is central to CBTN’s mission,” says Storm. “The Swifty Foundation has placed this incredible global partnership on a trajectory for continued growth and lifesaving breakthroughs.”
— Theresa Everline