Leah Nelson is grateful that Congress passed the STAR ACT earlier this year. The STAR ACT — the Childhood Cancer Survivorship, Treatment, Access & Research Act of 2017 — is a sweeping childhood cancer legislation that will help children with cancer live longer, healthier lives. And Leah, a Carver resident and senior at Chanhassen High School, was able to thank members of Congress via their staffers in person for their support.
Leah had the opportunity while in Washington, D.C., Sept. 14-16, attending CureFest. CureFest is an annual event that brings together the nation’s myriad organizations and foundations that fight childhood cancers.
Two years ago, Leah began experiencing baffling symptoms. Little more than a year ago, doctors finally were able to diagnose the cause; Leah had a cancerous germinoma brain tumor. She immediately started receiving treatment. On April 2, Leah’s cancer was declared in remission.
As a result, Leah is passionate about speaking up and raising support for pediatric cancer research. “Only 4 percent of (cancer research) funding goes to pediatric cancer research,” Leah said during a recent telephone interview, and it was her motivation for attending CureFest.
Despite its grim subject, CureFest is a festive weekend of activities. Youth also visit with members of Congress.
“My group talked to three different Congressmen’s staffers,” Leah said, from Arkansas, Alabama, and Florida. “We thanked them for passing the STAR ACT ... for working hard, and that there’s still more progress to be made. And we shared our (cancer) stories with them.”
How did you learn of CureFest?
One of our friends had cancer, and had been going to it for a couple years. When I first got cancer, we got information about it. But there was so much information to digest at the time, I didn’t remember it until they reminded my family of it a couple months ago.
What did you do during your stay?
On the first day, I met with the Congress members’ representatives, on the second day, we made posters — Save Our Lives, Not Your Dollars — and marched from Freedom Plaza to the Capitol Building, about a 20-minute walk. When it got dark, we got candles and walked from Freedom Plaza to the White House where we shouted out the names of kids who died of cancer, and then sang “Amazing Grace.” On Sunday, we were at the National Mall between the Capitol and the Washington Monument that was filled with booths and nonprofits, live music, speakers, all sorts of stuff like that. At the end, there was a ceremony where all the survivors were called up and received medals for being survivors and fighters.
What did you gain from the experience?
It was fun, it was inspirational. It felt amazing to be surrounded by people who knew what you went through. You could crack a joke about cancer and not be afraid someone would look at you. You could really be yourself. I felt surrounded by so much positivity. There was a lot of sadness, grieving for kids who lost their battles but it was also very motivating and inspirational.
— Unsie Zuege