September was an incredibly active month across the childhood cancer community.
Throughout Childhood Cancer Awareness Month, CAC2 members, Board leaders and partners participated in conferences, research meetings, advocacy events, community gatherings and conversations across the country and around the world.
From sharing lived experience with researchers and policymakers to connecting with families, advocates and organizations, the CAC2 community showed up throughout the month with one shared goal: improving outcomes and quality of life for children with cancer, survivors and their families.
Below are just some of the places CAC2 members and partners showed up this September, along with firsthand reflections from members of our community.
We also know these stories represent only a portion of what happened throughout the month. We invite CAC2 members and partners to help us continue building this recap by sharing their own photos and experiences.
Childhood Cancer International Conference
Annette Logan-Parker, CAC2 Board and Executive Committee member representing Cure 4 The Kids Foundation, participated in the Childhood Cancer International Conference, joining conversations with people from around the world working toward better outcomes and better lives for children with cancer and their families.
Annette shared this reflection:
At the Childhood Cancer International Conference, I had the opportunity to be in conversation with people from around the world who are working toward the same goal: better outcomes and better lives for children with cancer and their families.
Different countries. Different healthcare systems. Different resources.
And yet, many of the conversations sounded remarkably familiar.
Families struggle to navigate complicated systems. Access is uneven. Policies designed with good intentions can create unintended barriers. And too often, the people who understand those barriers most intimately are invited into the conversation only after the problem has already been defined.
That may be one of the most important lessons we can carry into policy work.
Lived experience is not simply a story. It is expertise.
We often invite patients and families to share their experiences, and that matters. But inclusion must mean more than asking someone to tell their story. It means allowing what they know to influence how we define problems, establish priorities, design solutions and measure whether those solutions actually work.
The same is true of survivors, clinicians, advocates and others who experience the healthcare system from perspectives that data alone cannot capture.
Data can tell us how many families encounter a barrier. Lived experience can tell us why the barrier exists, what it costs a family to overcome it and whether our proposed solution will actually help.
That is why lived experience belongs at the beginning of policymaking, not at the end.
Before we ask, “What policy should we create?” perhaps we should first ask:
Who experiences this problem? What do they know that we don’t? And are they at the table while we decide what to do about it?
The conversations at CCI reinforced something I believe should guide all of our advocacy: the people closest to the problem should be among the people shaping the solution.
Not because lived experience replaces evidence.
Because the best policy requires both.
Childhood Cancer Data Initiative Symposium
Ann Ramer, MPH, CAC2 Chair Elect and Individual Member, was invited to speak from the patient perspective at the Childhood Cancer Data Initiative Symposium at the National Cancer Institute.
Ann shared:
I was invited to speak from the patient perspective at the CCDI meeting at NCI Shady Grove.
The focus of the symposium was on the progress CCDI has made since 2019, including robust enrollment in the Molecular Characterization Initiative, now exceeding 10,000 participants.
Additionally, CCDI has become the second-most-used data set at NCI, which is an indication that the infrastructure built with aspirations of supporting bench science and improved treatments is now demonstrating clear value to the research community.
One particularly interesting area of progress is the application of artificial intelligence to digitized pathology slides. This work could allow for improved diagnostics, including for those living in remote and under-resourced areas.
The symposium highlighted the growing role of shared data, technology and collaboration in advancing childhood cancer research and improving access to expertise.
Childhood Cancer Community Conversations Summit
On September 21, Susannah Koontz, CAC2 Treasurer and Individual Member, joined six additional CAC2 Board members, along with representatives from CAC2 member organizations, at the Childhood Cancer Community Conversations Summit in Washington, DC.
Susannah shared this recap:
On September 21, seven CAC2 Board members, along with several representatives from CAC2 member organizations, participated in the Childhood Cancer Community Conversations Summit in Washington, DC.
This meeting, hosted by the Advanced Research Projects Agency for Health, was a convening of federal agencies, research institutions, clinicians, researchers, industry, innovators, hospital systems and advocacy organizations driving innovation every day to create cures and improve quality of life for kids with cancer.
The Summit built on last year’s community roundtable discussions of the Childhood Cancer Convening and the ongoing conversations during the past year of its four workgroups.
Participants identified forward-thinking opportunities for the next 12 months aimed at accelerating progress in pediatric cancer research and supportive programs through cross-sector collaboration.
Stay tuned for updates on the initiatives, tools and resources the group identifies for next steps in the effort to end childhood cancer.
The gathering continued the kind of cross-sector collaboration at the heart of CAC2, bringing together perspectives across advocacy, research and treatment, family support and survivorship.
CureFest
For many members of the childhood cancer community, CureFest is more than an annual event. It is a place where families, survivors, advocates and organizations come together around shared experience, remembrance, advocacy and hope.
Sarva Channarajurs, CAC2 Board Member representing the Mithil Prasad Foundation, reflected on what continues to bring him back year after year:
For more than five years, CureFest has been an annual tradition and a commitment for me.
What keeps me coming back?
Is it the company of fellow bereaved parents, or the triumph of survivors? Knocking on our representatives’ doors to share our stories and shape policy? The CAC2 reception, or the sheer grit of kids fighting cancer?
Is it that no one needs me to explain my situation because they understand with a single look?
Is it the programming offered for everyone touched by cancer, or the shoe memorial that gives a visual reminder of what we fight for?
It is all of the above.
This year’s CureFest, held September 18–20, was bigger and better than ever and, as always, therapeutic and exhausting at once.
My highlights included the tribute wall stretching across the lake, the booths of so many nonprofits and organizations, the beautiful Saturday evening program and the candlelight vigil.
One parent even traveled from France to attend, a testament to how far CureFest’s influence reaches in our community.
We arrive carrying our hope and our grief, and we leave committed and inspired.
— Sarva Channarajurs, Mithil Prasad Foundation
Voices From the Community
Childhood Cancer Awareness Month was also an opportunity for members of the CAC2 community to share perspectives beyond conferences, meetings and events.
CAC2 member Joshua Omale contributed an essay, “This Is Where the Gold Ribbon Becomes More Than a Symbol,” reflecting on what the gold ribbon represents and the people, experiences and continued work behind it.
Across the Childhood Cancer Community
These were only some of the events, meetings and activities that brought the childhood cancer community together throughout September.
CAC2 members and leaders also participated in many additional events and activities throughout the month, including:
- The BrainStorm Summit
- The Association of Pediatric Hematology/Oncology Nurses Annual Conference
- Childhood cancer advocacy activities on Capitol Hill
- The Childhood Cancer Summit and Congressional Childhood Cancer Caucus activities
- Recognition of Congressman Michael McCaul for his longstanding work in childhood cancer advocacy
- The Golden Toast
- Turn the World Gold activities on September 30
- Additional research, policy, advocacy, survivorship, family support and community meetings throughout Childhood Cancer Awareness Month
Among the CAC2 Board members representing the Coalition across September activities were Ashley Guthrie of Austin Hatcher Foundation for Pediatric Cancer; Michael Henry of Pediatric Brain Tumor Foundation; Misha Mehta of Neev Kolte & Brave Ronil Foundation; Jay Rice of Tough2gether; T.J. Koerner, Individual Member; and Steve Wosahla of Children’s Cancer Cause, along with many additional CAC2 members, partners and community leaders.
Together, these events demonstrate just how broad the childhood cancer community is and how many different perspectives and areas of expertise are needed to move progress forward.
Help Us Tell the Full Story of September
Were you at one of these events?
Did your organization host a Childhood Cancer Awareness Month activity, attend a conference, meet with policymakers, participate in Turn the World Gold or gather with the childhood cancer community in another way?
We want to hear from you.
Share your photos and a few sentences about:
- Where you were
- Who participated
- What your organization was involved in
- A favorite moment or takeaway
- What the experience meant to you
We’ll continue adding moments from September to this community recap and will share additional highlights in an upcoming Childhood Cancer Awareness Month recap email.
Submit Your September Photos & Experience
Thank you to every CAC2 member, partner, advocate, researcher, healthcare professional, survivor and family who helped make childhood cancer visible throughout September.
Childhood Cancer Awareness Month may have ended, but the work continues.
