Hello darkness, my old friend,
I’ve come to talk with you again.
Because a vision softly creeping,
Left its seeds while I was sleeping.
And the vision that was planted in my brain,
Within the sound of silence.
― Paul Simon
Most of the time we are overwhelmed by an avalanche of communications – more information in a day than our parents received in a year; more in a year than our grandparents received in a lifetime. We get just too much information, often about too few things, to the point all we can do is literally categorize, not understand. What is the cost to the issues that can’t cut through this clutter? One of the most important issues that receives little attention and precious little funding is childhood cancer. Children’s Cancer Therapy Development Institute (cc-TDI) is here to change that.
I have the privilege of sitting on the board and being part of a team at our firm that does pro-bono work for cc-TDI. It’s a nonprofit determined to ensure that promising drugs are sent into clinical trials, especially for the most dangerous of childhood cancers. To laypeople, a “preclinical gap” in the prevention and treatment of a disease sounds innocuous – something that ought to be easily resolved, certainly not something that involves issues of life-and-death. But to medical professionals or to the parents of kids with cancer, a preclinical gap is a heartbreaking and oppressive reality. Sadly, the preclinical gap in childhood cancer research contributes to thousands of avoidable deaths every year in the U.S. and across the world.
Here’s why the nonprofit cc-TDI is so focused on bridging the chasm between research and treatment in childhood cancer. Despite breakthroughs in research laboratories, many forms of childhood cancer have seen little to no advancement in treatment options for the past three decades. The system contains a huge glitch: pathbreaking new discoveries are made in research labs, but they are rarely if ever translated into new treatments for children.
Why? It comes down to the metrics of pharmaceutical marketing. Thank heavens the universe of children with cancer, although tragic in every sense, remains (relatively) small. For the pharmaceutical industry, the process of turning a scientific discovery into a new treatment is tedious and time-consuming; it generally does not generate significant profits – unless, of course, the potential marketplace acts to spur preclinical (preliminary) and clinical trials.
cc-TDI is determined to provide that spur. Its research team is exploring and testing state-of-the-art treatment options for the most urgent issues facing children with cancer. As cc-TDI’s Scientific Director, Dr. Charles Keller, observed in a recent interview, “The mission is simple. We just want to make all childhood cancer universally survivable.”
The example of Megan Bugg, a childhood cancer survivor and cc-TDI team member, illustrates the urgency of closing the gap in childhood cancer research. For six years, 19-year-old Megan Bugg has fought a rare form of skeletal muscle cancer known as alveolar rhabdomyosarcoma. Somehow, she’s endured four relapses, some 117 weeks of chemotherapy and more than 130 radiation treatments. She’s helped crowdfund $212,000 to underwrite research that could enable a national clinical trial in which she can enroll.
“Through my experiences I have become a passionate advocate for childhood cancer research,” Megan says. “My personal goal is to make sure no more kids have to experience what I have experienced.”
Another inspirational example is Calleigh Germer of Tigard, Oregon, who promised her terminally ill 11-year-old friend that she would devote her life to finding a cure for her friend’s cancer. Three years later, Calleigh is the 14-year-old chairperson of the cc-TDI Junior Board of Directors.
Powerful stories of sacrifice and resolve abound throughout cc-TDI. They all point to the need to fix the hole in the system, to get promising childhood cancer research into preclinical trials so that young people can get the treatment they need to get better.
It has been my honor to serve on cc-TDI’s board of directors. When I hear the frustrations of pediatric cancer researchers about not getting their potential breakthroughs to patients, I can’t help but think the same thing that so many Americans feel these days: “C’mon. We’re better than this.”