Written by Ashley VanDerMark
CKc attended CureFest for the 2nd year and wow, what a difference a year makes!
Attendance, exposure, social media presence… it all was higher than last year. But guess what? The number of children diagnosed was higher, too (because as we know, pediatric cancer is on the rise).
Saturday’s event was a beautiful night of singing, dancing and testimonies from both children and parents. It was the event leading up to the vigil at the White House.
We met so many amazing and brave kids, including Parker Kress Power for Parker , a teenager from Iowa who battled Ewing’s Sarcoma. Even though his treatment ended in December, Parker’s leg will be amputated in October because his body can’t fight a persistent infection.
We also got to see beautiful Gabi Shull dance. Gabi is an osteosarcoma survivor. Gabi already underwent the surgery that Parker is having – a rotationplasty. This surgery removes the knee joint and replaces it with the ankle joint turned 180 degrees, so the joint can allow a prosthesis to rotate. It is a radical surgery, and one that a teenager (or anyone) shouldn’t have to “choose” in order to save their lives. Both of these amazing kids have watched their friends die. It’s not right, and we must do better for our young people. So much better.
As you might recall, Melissa and I spent more than three hours in front of the White House last year waiting for the candlelight vigil to begin. The Secret Service escorted our group out of the park across the street as the President was leaving via a different route. After hours of waiting, kids were crying and parents were upset. Many children in treatment needed to return to their hotels for medication and rest. I remember thinking that the push back… the delay… it felt like the overall attitude towards childhood cancer. That measly 4% of funding, lack of research, lack of awareness… this was just a tangible representation of our children being pushed aside. So when the Washington Post and other media outlets got a hold of the story, I was grateful for the press. Director Joseph Clancy, head of the Secret Service, issued an apology and tried to rectify the situation. But at CKc, action means more than words, and we all knew that some children who were denied that opportunity would die before the next CureFest rolled around.
As I drove to CureFest on Friday, I silently prayed that something tangible, some type of ACTION, would help put last year’s unfortunate situation to rest. Towards the end of the performances, just before we headed out to the White House, Director Clancy showed up, unbeknownst to the CureFest organizers. He was asked to say a few words and he admitted that before last year, he didn’t know anything about childhood cancer, but he did now. His presence there spoke volumes… our kids were finally being noticed! As one person put it, “Director Clancy is not just the protector of the President, but now a protector of children.” It was definitely a highlight.
After filling the streets of DC with close to 1,000 people, we ended the night with our candles held high while singing “Amazing Grace” in front of the White House, honoring all of the warriors and angels affected by cancer. It was a powerful and emotional moment.
The actual festival was eye opening. Foundation after foundation lined up around the National Mall, the Washington Monument flanking us on one side and the US Capitol on the other. Many were there to provide family support, and several, like CKc, were focused on funding research. I went to each booth to learn more… we at CKc can’t learn enough!
There were definitely moments where things felt as if they were coming full circle. Moments such as reconnecting with the Super Sam Foundation and seeing how much they have grown in the last year. In addition to funding research, Sam’s twin Ava started a sibling care club. CKc recently funded a trial that focuses on rhabdomyosarcoma, the cancer that stole Sam from his family. Or learning that our neighbors in the next booth lived nearby and were hosting an event this weekend to celebrate their beautiful baby girl who died from brain cancer. We can’t wait to support the Addison Bryan Foundation as her daddy shaves his head. And moments such as watching my sister-in-love Kendra step whole heartedly into the world of advocacy for kids’ cancer after having it hit so close to home.
We have been blessed with an amazing lobbying team at Venable Consulting LLP. They have worked incredibly hard to help provide a platform for us to share our initiatives with legislators on Capitol Hill. What a blessing it was to have Megan Malone join us at our booth again. Megan is a staunch advocate for CKc and I loved being able to share the great work that other foundations are doing with her.
I’d like to give special thanks to my son Connor, CKc’s first youth ambassador. He did an amazing job teaching visitors the hard facts about pediatric cancer. He and Cannon have always had an incredible bond, and I was proud of the way he met each child, got down on their level, and let them know that CKc will fight until there is no longer a need for CureFest.
We have a couple of special mottos at CKc. “Go big or go home” and “There can be no egos in the world of pediatric cancer.” Our foundation prides itself on supporting others… because at the end of the day, it’s the cure that we so desperately need so that cancer in children never exists again. Big moments, small moments, ripples, waves… whatever it takes to get us there… that’s the heart of CKc.