I am proud to ride in the PMC because it has profoundly helped my family. Here is an incredible story about my family. As many of you know, my son Nathan was diagnosed with an inoperable, incurable brain tumor when he was four. As someone who works in drug development, I was shocked by the limited treatment options available to Nathan. He faced the same frontline chemotherapy treatments that had been used for four decades- since before I was born.
As I watched Nathan suffer through two grueling and toxic treatment regimens, I pledged that I would do everything possible to ensure that if Nathan’s tumor ever grew again, he’d have access to state of the art trials, cutting edge science, and better treatment options.
Cara and I began supporting research that targets the most-common mutation found in these tumors, the BRAF-KIAA1549 fusion mutation. This work, funded almost entirely by families of kids with brain tumors, identified an adult melanoma drug, TAK580, which looked promising. For the last few years, we’ve worked with family and friends to fund this $1.6 million DFCI trial, and I am so grateful to all of you who have helped us support the trial’s early stages.
I’m especially grateful because this project became even more personal when Nathan was 10. After nearly four years of stability, Nathan’s brain tumor started growing again in 2017. By Christmas he was having trouble using his right side— skating on his right leg, lifting a fork, holding his hockey stick, chasing his annoying little brothers. He never complained, never missed a hockey practice, never stopped trying to ski, and he never let it slow him down. In February 2018, the TAK580 trial—the trial we’ve worked so hard for years to fund—finally moved into phase I. Amazingly, Nathan became the first child in the world to enroll. Two months later, we received stunning news: for the first time in Nathan’s battle, his brain tumor had shrunk.
Nathan could ski again! He could throw a ball! He could pummel Joshua and Lucas! This feels like a miracle, but it’s not: the trial only exists because of the generous support of people like you. And it still needs our support: for Nathan, for our six-year old friend Alison, who has also recently joined the trial, and for all of the other kids who will be saved by TAK580. Nathan has a long road ahead, but he’s made tremendous progress in recent months, thanks to this drug. I see him riding his bike down the street now, and I still have a hard time believing it’s real. Together we helped make this possible!
Please consider supporting my PMC ride this year. The money I raise goes directly to the Team Nathan Fund, which helps to fund Dana Farber’s groundbreaking pediatric brain tumor research program. In other words, your support will directly fund Nathan’s clinical trial. How often do we get to see such concrete evidence that our
We accept donations of any amount. Help us reach our goal of $150,000.
Fund Name: The Team Nathan Fund
Account Code: 9618809
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