By Khalida Sarwari
Two years ago Sam Nash, a shy 10-year-old student at Sacred Heart School, strapped on his sneakers and ran 30 miles on his own over the course of a month to raise money for cystic fibrosis research. Now, a few inches taller and two years wiser but no less shy, Sam is hitting the pavement yet again, only this time around he’s bringing along friends for the ride.
Hoping to build on the success of his last run, Sam, 12, has pledged to run 30 miles by the end of October. He’s setting his personal donation goal at $20,000, but because he has his twin sister, Sydney, and friends from school running with him, he’s cautiously optimistic they can raise up to $50,000.
All of this begs the question: Why is Sam running again? The answer is simply that the work to find a cure for cystic fibrosis is still not over, although his father, Patrick, says there are signs that researchers are coming close to finding one.
This summer, the Food and Drug Administration approved a new drug for people with the most common genetic type of cystic fibrosis, a disease that’s characterized by the buildup of sticky mucus in the lungs, causing frequent infections and a gradual decline in lung function. The drug, Orkambi, is designed to try to counteract the underlying genetic defect that causes the disease, as opposed to treating symptoms.
“A chunk of our money each year goes to the CF Foundation,” said Patrick. “It’s amazing; they’re the ones that seeded money into this small biotech company that produced this new drug. We’re a tiny little drop in that, but at least we’re something.”
A July 2 New York Times article announcing the new drug states that about 30,000 people in the U.S. have the disease and that death from respiratory failure often occurs when people are in their 20s, 30s or 40s.
Patrick Nash’s sister, Elizabeth, died from the disease at age 32, a month before the birth of Sam and his sister. Shortly after her death, they created a foundation in her memory to raise money for cystic fibrosis research and scholarships for people afflicted with the disease.
Patrick pointed out that the family has a painting on their living room wall of Elizabeth carrying the Olympic Torch in Salt Lake City a year before she died. Even though he didn’t get a chance to meet her, Sam said he feels connected to his aunt.
“We always feel like she’s looking down on us, like [she’s] blessing us,” he said. “We were sad that she died.”
And that’s why one day two years ago, he approached his parents and told them he wanted to help. With his mother’s guidance, he launched a campaign on social media to get the word out about what he was doing. His idea was he’d run one or two miles a day and have people sponsor him by the mile. The plan worked; by the end of summer, he’d raised close to $30,000, which included matching funds from the 1440 Foundation, an organization that supports extraordinary and inspiring acts, particularly by youth.
So what happened to all that money? The Nashes put it toward 15 college scholarships ranging from $1,250 to $2,500 that were awarded to students with cystic fibrosis from all over the country. Sam even received a thank-you note from one of the recipients.
She wrote, “‘Thank you, Sam, for doing this for me,’ and that she’s now on her college lacrosse team and having a good time,” he said.
Sam started running for the cause again on Oct. 1, and by his second week he had racked up 10 miles. He runs around his neighborhood block in San Jose, sometimes at Vasona Park, and at local tracks. Some days he runs with his parents; other days he’ll do a group run with the handful of friends he’s recruited. Most of them approached him after the last time he did this and told him they’d like to join if he decided to do it again.
The seventh-grader may get shy about speaking in front of an audience of 500–as he had to do at Archbishop Mitty shortly after his accomplishment two years ago–or even about sharing simple details about himself, but running again for this cause is something he didn’t think twice about.
“I knew I wanted to do it again because it felt like a good thing to do,” he said.
Having so many of his classmates come on board doesn’t surprise his mother, Carolyn, who said she’s noticed they’ve been a close-knit class with a giving spirit from the start.
“They’ve always held this idea of giving back,” she said.
To follow Sam’s progress or donate to his cause, visit samsrun.org. More information about the Elizabeth Nash Foundation is available at elizabethnashfoundation.org.
