This September, during Childhood Cancer Awareness Month, JAB and NextGen members traveled to Washington, D.C., to participate in Kids V. Cancer’s Climb the Hill Day. Together with young cancer advocates from across the country, they shared their stories with members of Congress and advocated for continued progress in pediatric cancer research and legislation. NextGen member and OsteoWarrior Matthew Ceelen reflects on the experience, the importance of honoring Mikaela Naylon’s legacy, and why the fight for progress continues long after September ends.
Thursday, September 17th:
On my plane’s final descent towards Washington D.C.’s Reagan National Airport, our nation’s monuments, symbols of progress, reflection, and the indomitable pursuit for a better future, filled my window.
I was arriving for my second Climb the Hill, and was elated to reunite with my osteosarcoma family, with whom I have grown so close to over the years. Last year’s trip was a true catalyst for that bond. Two days of advocating for the Give Kids a Chance Act sharpened our ability to use our story as a source of strength and, most importantly, brought us all closer together.
While advocating for the bill last year, I, like many other incredible survivors from MIB Agents, advocated alongside our friend Mikaela Naylon. Talking to congress and senate staff with her, I remain incredibly moved and inspired by her courage and fortitude to fight for change she never got to see. The passage of the Mikaela Naylon Give Kids a Chance Act this past winter, after five long years of fighting, is a victory bittersweet for all of us. We all are incredibly proud to honor Mikaela through the passage of last year’s bill, and remain steadfast in our commitment to further pediatric cancer research during the 2026 Climb the Hill.
Rushing off the plane, I was thrilled to catch an Uber to our hotel at the Kimpton George Hotel to reconnect with my friends. Immediately stepping through the sliding doors of the hotel, I ran into my fellow Junior Advisory Board (JAB) and NextGen Advisory Board members, who just returned from a lovely dinner at Kat and Darya’s house. After a round of hugs and catching up, I felt as if we just saw each other last week. Reminiscing on our favorite stories, placing countless iMessage stickers we have of each other in the group chat, and the ability to effortlessly pick up where we last left off are the small reminders of the unbreaking bond forged by our common cancer experience.
Chatting about the day ahead, we held an impromptu meeting to chat about our goals. This year’s trip was very much about reflection and gratitude – thanking legislative members for their support in passing this landmark law while continuing the fight to provide continued progress for all who suffer from a severe lack of effective treatment options.
Specifically, we planned to ask for support of Rep. Michael McCaul’s tireless efforts in championing pediatric cancer legislation in the house. In addition, as all pediatric cancers are a rare disease, the Childhood Cancer Data Initiative’s (CCDI) efforts to collect precious data from around the country and make it accessible and optimized for research, is a fundamental mechanism for innovation and discovery in treatment options we hope to nurture. The National Cancer Institute only allocates 4% of its budget toward pediatric cancer research. So, we challenge our congressmen who proudly champion pediatric cancer legislation to increase the funding of the CCDI for the government’s FY 27 budget, making us more than just 4%.
After the chat, I went upstairs with a surprise gift. They saved a plate from the dinner for me! I devoured the incredible Persian food in record time, so it is safe to say, I really enjoyed the delicious meal. :)
Friday, September 18th:
Too excited for restful sleep, all of my roommates got up early for the big day. Walking over to one of the congressional office buildings, Rayburn, I crushed a coffee and surprisingly tasty trail mix I discovered in my backpack the day before. I know, truly the breakfast of champions.
Gathered on the Capitol Hill lawn, I could already see the number of advocates visibly larger than before – and at 8 am no less! After reuniting with the wonderful advocates I had met last year, as well as the fantastic Kids V. Cancer leaders Nancy Goodman and Jennifer Flynn, who organize and coordinate Climb the Hill Day, I could already feel the energy in the air.
Like last year, JAB and NextGen members had the responsibility of leading remarkable adolescent and young adult advocates to all corners of the Capitol. This year, I had the incredible opportunity to co-lead, with Shannon, an all-star group ready to make change.
Over the course of the day, we met with three congressional staffers and one senate staff member, all of whom were deeply moved by our raw and emotional stories our group shared. Through our lived experiences, whether it was receiving chemotherapy for the first time or watching a sibling get first diagnosed, our deeply personal, raw stories efficaciously demonstrated the impact that stagnation in pediatric cancer research can have on children, families, and a community.
One of the most rewarding parts was witnessing our own team grow through each meeting. I greatly enjoyed watching kids who, understandably, were shy and nervous during our first meeting blossom into a passionate and eloquent advocate at the end.
At the end of the day, I distinctly remember leaving the Rayburn Senate building and feeling some of the same energy I felt on the lawn earlier that morning, transforming the once sleepy halls of congress. Energy for progress. Energy to keep showing up. Energy to be courageous enough to push for a better tomorrow, no matter how hard. I hope that energy stays in those halls throughout the year, as we hope for continued advancements in pediatric oncology research and legislation.
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Epilogue
As Childhood Cancer Awareness month comes to a close, I do not see it as an end. Rather, in the words of Winston Churchill, “Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning”.
I find the words especially apt as, for those who advocated on Capitol Hill, we all know how pediatric cancer does not just affect us for the month of September (my birthday month by the way). It affects all of us every day for the rest of our lives.
Thus, if cancer does not rest, neither should we! Just like our meetings with legislative staff, I want to conclude with an ask. Now that Childhood Cancer Awareness month has energized us, educated us about the continued effects of a more than 40-year-old first line standard treatment option for osteosarcoma, and inspired us to fight for progress, I ask all of you to continue this energy throughout the year.
Just like we saw with the Mikaela Naylon Give Kids a Chance Act, progress does not happen all at once. It takes a team of dedicated and inspiring individuals from around the nation to unite as one, never allowing “maybe” and “we will look into it” as a finish line, as a moment to stop. With passion, commitment, and collaboration, urgency never fades, and the perpetual energy for change carries on far beyond Capitol Hill!
