Childhood Cancer Awareness Month Culminates with Big Week of Events in Washington, DC
As Childhood Cancer Awareness Month comes to a close, we’re reflecting on the many impactful events last week that brought families, survivors, and advocates together to rally around our shared goal of making childhood cancer a national priority.
Children’s Cancer Cause was proud to return as a sponsor of CureFest, an annual event that serves as a springboard for a host of other activities around the same time in Washington, DC. A poor weather forecast posed some obstacles to the outdoor festival, but the childhood cancer community is used to dealing with stormy weather and curveballs. We salute CureFest organizers for pivoting quickly and providing a wonderful indoor festival! Thank you to the many families who stopped by our CureFest table. It was an honor to hear your stories and to share our advocacy materials with you.
"It's a fact that 95% of survivors will have at least one late effect by the time they're 40. I'm thinking: One? If only I was so lucky."
- Rachel, brain tumor survivor
One of the many highlights leading up to CureFest was the Childhood Cancer Forum hosted by the White House Cancer Moonshot. Among the full slate of impressive speakers was Dr. Greg Reaman, the Scientific Director of the National Cancer Institute’s (NCI) Childhood Cancer Data Initiative (CCDI) and a member of our Board of Directors, and Rachel McCallum, a childhood cancer survivor who sits on our Survivorship Advisory Council.
Rachel powerfully articulated the unique needs and concerns of adult survivors of childhood cancer. “As a thirty year pediatric brain tumor survivor, I’ve struggled to establish myself as an independent adult,” she shared as an opening speaker in an event that was livestreamed by the White House. “Many of us were left to fend for ourselves as we transitioned from pediatric oncology to adult primary care. If you can even call it a transition.”
We know that too many survivors like Rachel are falling through the cracks. The Comprehensive Cancer Survivorship Act is bipartisan legislation that aims to address gaps in survivorship care and develop desperately needed standards to improve the quality of care for all cancer survivors. You can take action here to help make sure that lawmakers know about this bill and its potential to help survivors like Rachel.
A recording of the Forum, including remarks from White House officials and a panel of distinguished experts, is available here.
The Forum also provided a valuable opportunity for us to collaborate with other advocates in a breakout session on barriers to care. We discussed the heavy financial burdens - and associated stressors - that families and survivors face, and we brainstormed together how our community can better connect those struggling with resources that can help.
A proclamation from the White House formally recognizing Childhood Cancer Awareness Month echoed the importance of this work: “Cancer is brutal no matter whom it strikes, but it is particularly cruel when it affects the youngest among us. When they should be learning in school and playing outside, children with cancer are oftentimes fighting for their lives in hospitals instead. A cancer diagnosis takes a tremendous toll on their family, friends, and community. Caregivers are often left struggling to deal with a flood of medical information, to make sense of treatment options, and to navigate mounting medical bills all while trying to stay hopeful and steal moments of joy with their loved ones.”
Collaboration through Coalitions
Children’s Cancer Cause joined with our Alliance for Childhood Cancer colleagues in touring the National Cancer Institute research labs and in a lobby day on Capitol Hill. In our Hill meetings, we urged Congressional offices to increase funding for cancer research, provide full funding of the Childhood Cancer STAR Act and CCDI, and to work with us in preventing future pediatric drug shortages.
With the threat of a government shutdown looming, this was an especially critical moment to present our case to Congress about the importance of robust, predictable, and sustained funding for cancer research. Programs supported by the NCI are driving progress in childhood cancer research, treatments, and survivorship care. Shutdowns, continuing resolutions, and funding cuts put this progress at grave risk. Please join us in urging Congress to act quickly and protect cancer research funding.
We had so many valuable, substantive conversations with colleagues in our community at receptions hosted by the Coalition Against Childhood Cancer (CAC2), Hyundai Hope on Wheels, and the Carson Leslie Foundation (and other Golden Toast sponsors). We thank every organization, coalition, and sponsor for creating these valuable networking opportunities throughout the week.
Saluting Congressional Champions
We also recognize and thank the co-chairs of the Congressional Childhood Cancer Caucus for hosting the 14th Annual Childhood Cancer Summit on Capitol Hill.
“This is the most righteous cause I've been involved with,” said founding Caucus chair Representative Michael McCaul (TX-10). “We’re gonna win and make childhood cancer history.” Childhood cancer survivor Brianna Crawford spoke to her experience and that of many like her who are now young adults. She advocated for “the certainty of survivorship” for our community.
Thank you to Rep. McCaul’s other Caucus co-chairs for their continuing leadership in prioritizing childhood cancer on the nation’s health agenda: Rep. Ami Bera (CA-06), Rep. Kathy Castor (FL-14), and Rep. Mike Kelly (PA-16).
Learn more about the Congressional Childhood Cancer Caucus and its members here.
If your representative is not a member, please urge them to join!