Can CureFest cure Mondays?
Maybe, but Simon certainly can
I wasn’t planning to go into the city last weekend. I had just finished my first week at work and wanted two days where I didn’t have to see a metro station. But my Aunt was in town, visiting a friend who had a booth at CureFest, so I made the hour trip to the National Mall from just outside of Silver Spring.
Pounding sun and zero shade had no effect on the crowd on the multitude of adults and kids that turned out for CureFest. Charities, foundations and lobbyists from across the country descended on the city to raise awareness for pediatric cancer, and the reprehensible, pitiful funding it receives compared to adult cancer research . Only 4% of the National Cancer Institute’s funds go exclusively toward childhood cancer research, leaving the private sector — pharmaceutical companies — to cough up the rest. Spoiler: they don’t. Even though 13,500 kids will be diagnosed with cancer in the next year, the economic upside isn’t enough for drug companies to pour big bucks into development. Add pediatric cancer patients to the list of capitalism’s victims.
My aunt is good friends with the founder of Kids v. Cancer, a 501(c)(3) that is responsible for the recently passed RACE for Children Act. The RACE Act forces drug companies to test new cancer drugs in children, if it is relevant, closing a legislative loophole. After my Aunt took me out to lunch — always the best part about visiting relatives— I was fortunate enough to speak with someone who personally lobbied Congress to pass the RACE Act: a 13 year old young man named Simon. (Simon’s name has been changed)
“I was in a group with two other kids, both of them were older than me, like 15 or 16. But the smaller group was nice because everyone got to talk in the meetings.” After Simon had walked off to hand out more stickers featuring the Kids v. Cancer moniker, I turned to my Aunt with my mouth gaping. I couldn’t stop repeating the obvious fact that Simon was 13 years old. At 13, the biggest worry I had was if the cute, blonde, saxophone player a few rows ahead of me in band liked me the way I liked her.
The most poignant moment of my afternoon at CureFest was when Disney Star Sabrina Carpenter went on stage (I can’t believe I just wrote that sentence). At first, Simon was hanging around the booth where I was talking to my Aunt and her friend about my recent move to DC. Then he said, “I guess I should take a video for my sister. She loves Sabrina,” in that awkward, self-conscious, me-think-thou-dost-protest-too-much voice so common in middle-school boys. Seeing the same young man who fought injustice in the country’s most influential halls struggling not to enjoy a Disney Star’s concert was too much juxtaposition for me to handle. I stuffed a laugh deep down in my stomach and returned to my conversation.
Starting a new job in DC as one of the infinite K St. interns is equal parts empowering in its aura, and frustrating in its plodding pace. I need something to speed it up. Make the hours, days, weeks, and years of work pass by in the time it takes to sign a new piece of legislation or pull the lever in the voting booths I remember as a kid — the ones where my parents would let me flick the switch and pull the curtain closed. The joy on Simon’s face, and the party-like atmosphere of all those kids that sacrificed their video-game, sports, or friend time to swarm the national mall, to shout from the top of their lungs about the cruel, disgusting, rampaging killer that is pediatric cancer, made me excited to go back to work on Monday.
Only curing cancer is a bigger miracle than that.
