Being Called to “Care a Whole Awful Lot”

“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” Dr. Seuss – The Lorax

The cancer research and development process is a long and, often times, arduous journey. It starts with an idea…a theory that there might just be another way to attack this horrible disease. But an idea alone will not solve the problem. It takes people caring “a whole awful lot,” as Dr. Seuss so eloquently put it. It takes individuals willing to do whatever it takes, to journey an uncharted course, to step outside their comfort zone, and make a difference.

It was 2007, at the time of Jack’s first relapse, when we first heard the concept for Hu3F8. The scene unfolded with a group of parents assembled at the Ronald McDonald House in New York City and a doctor with an idea. Each parent in the room had one thing in common: we all had a child with relapsed neuroblastoma, a diagnosis with no known cure. Everyone in that conference room was desperate for some glimmer of hope. Dr. Nai-Kong Cheung presented his research and offered a break through the dark clouds to a glimmer of sunshine and hope on the horizon. When he concluded his presentation there was only one question left to ask … “what do you need to make this treatment a reality?”

The answer to that question came with an initial one million-dollar price tag. It was a hefty sum, but each parent involved cared “a whole awful lot” about the child for which we were each fighting. We knew without our efforts “…nothing is(was) going to get better. It’s not.” And so, we went about the work of raising funds—both collectively and through our own private efforts. And, in 2009, our group of parents provided $1M towards the initial research funding.

Fast forward a decade to September 2018 when I learned the efforts of our group of parents resulted in an FDA Breakthrough Therapy Designation for Hu3F8, now known as Naxitamab. The implications of this designation are huge, as it will expedite the availability of the treatment to children worldwide. For our Jack, this hope simply came too late, but for others it is the answer to the tear-soaked prayers of parents hoping for a miracle.

I tell this story not for accolades or recognition but to make it very clear that the funds we raise at G9 are doing exactly what we hoped they would…they are helping researchers bring groundbreaking therapies out of the lab and to the bedside of children who desperately need them. They are giving more parents hope. Most importantly, they are allowing more children to survive and thrive.

Thankfully, I (and we at G9, collectively) have a village of individuals and businesses who also care “a whole awful lot.” Together, we are making a difference and funding new, less-toxic treatments, so that breakthroughs will allow every child, everywhere to survive cancer.

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