When I flew to Washington, D.C., for Rare Disease Day at the end of February, I was already signed up for Nevada’s Rally in the Valley of Fire half marathon on March 31. But on my way out of D.C., I stole a few minutes with my friend, Michelle Berg, in an airport Starbucks. And before I took the last sip of my chai tea, we’d hatched a plan for me to travel to Michelle’s hometown of Minneapolis for a 15K race (9.32 miles) just two weeks after my half marathon in Nevada. After a string of injuries, I’m careful about giving my body enough time to recover between races.
Sometimes, I break my own rules.
Michelle is more than just a friend; she’s vice president of patient advocacy at Abeona Therapeutics, a clinical-stage biopharmaceutical company focused on developing treatments for rare genetic diseases, like Batten disease. In 2016, Abeona added Dr. Steve Gray’s promising gene therapy work to its pipeline, validating our belief in the project at UNC. With a clinical trial on the horizon, our dream is coming true.
On Good Friday, I flew alone to Minneapolis to run the Hot Chocolate 15K with Michelle, marking state 17 in my quest for 50. I kicked off the trip with a talk at the University of Minnesota Center for Orphan Drug Research. I landed in Minneapolis just in time to catch a ride to campus and connect my laptop. It made for a crazy morning after a crazy week at home. But having the chance to share our story with a room of difference makers made it all worth it.
The weather didn’t cooperate on this trip. On race day, the radar looked like this:
I’d hoped for sunshine and a slight breeze, but it didn’t work out, and I’d come a long way. I tried to ignore the weather and went through my normal routine, writing my sister’s name on my arm and caking the soles of my blister-prone feet with Vaseline.
Michelle was recovering from an illness but braved the nasty morning to run the 5K. We huddled in her car in a parking lot half a mile from the start line until the last possible minute. We wished for a break in the clouds even as rain hammered the windshield, but the break never came. Thirty minutes before the start of the 5K, we wished each other luck, said goodbye and went our separate ways in the gloom.
At the start of the 15K, I splashed through rain puddles as warm, fat drops pelted my face and soaked through my clothes. I picked and stuck with a pace group – for the first half of the out-and-back course anyway – and hoped the puddles weren’t hiding ankle-breaking potholes.
I’ll be honest: at times, I wanted this one to end. I hear the Hot Chocolate 15K route along the Mississippi River is beautiful, but I couldn’t tell with all that rain. My clothes felt heavy on my body and muddy water soaked through my shoes and my legs felt like lead.
But it’s impossible to quit when you’re running for someone like Taylor. And it’s easy to find the energy to push through one more mile, and another, and another, when you know your sister wouldn’t stop running, if she could still walk. After the turnaround on the out-and-back course, I realized I couldn’t keep up with my pace group any longer. But somewhere on that waterlogged course along the river’s edge, I heard my own voice, imploring my body to keep pushing forward.
When I crossed the finish line, my heart felt full, and my legs felt light, and suddenly I couldn’t get enough of that race day feeling: that feeling that through my sister’s story and courage and love, we can achieve anything we imagine. And as I picked out Michelle in the crowd of spectators and felt the medal around my neck and walked off the soreness in my legs, I thought only about Taylor and the bright future she inspired but won’t live to see.
In the event at the university on Friday, I told the room of scientists and aspiring scientists that one day, they’d have to look deep inside themselves to fix a problem. They’d have to turn their backs on logic and numbers and facts in favor of faith and heart and imagination. And at the end of my 15K in rainy Minneapolis, I thought about how imagination – not logic – drives most of the good in this fight.
I’ve finished races in 17 states. At this rate, I’ll reach my goal in six years. I don’t know if I’ll keep up the pace, or if I even care. But I know this: my crazy, incredible personal journey to fight rare disease is just beginning.
