In pediatric cancer, progress is rarely fast. It is built through research, persistence, and the systems that help scientific discoveries reach children and families.
In Episode 52 of Game Over: c*ncer, hosts Dana Nichols and Val Solomon sit down with Dr. Susan Weiner, founder of Children’s Cancer Cause, childhood cancer advocate, and national leader in pediatric cancer policy. Drawing from decades of experience, Dr. Weiner shares how advocacy has helped shape the pediatric cancer landscape we know today.
Watch Dr. Weiner’s episode here: How do laws, funding, and advocacy shape the future of childhood cancer research? | Dr. Susan Weiner | 52
Building a National Voice
When Dr. Weiner founded Children’s Cancer Cause in 1999, there was no unified national voice advocating for the unique needs of children with cancer. Her goal was to bring those needs directly to policymakers, federal agencies, and research leaders. Over the years, that work has helped strengthen connections between families, researchers, advocacy organizations, and lawmakers while elevating childhood cancer as a national priority. Scientific progress depends not only on discovery, but also on the funding, legislation, and systems that help new treatments reach patients.
The Work Behind Policy Change
Advocacy, as Dr. Weiner describes it, requires “infinite patience”.
Creating change often means years of coalition building, educating lawmakers, sharing patient experiences, and returning to the same conversations again and again. While the process can be slow, those efforts have helped drive major advancements in pediatric cancer research and care.
The episode highlights several important legislative milestones, including the Rare Pediatric Disease Priority Review Voucher Program, the STAR Act, and the RACE for Children Act. Together, these efforts have helped incentivize pediatric drug development, expand survivorship initiatives, and improve access to promising therapies. Dr. Weiner also discusses ongoing work to improve survivorship care and strengthen support for patients as they transition beyond treatment.
Looking Beyond Survival
As more children survive cancer, attention must also be given to life after treatment. Dr. Weiner discusses the long-term effects many survivors face, including hearing loss, heart complications, and other treatment related challenges. She explains how survivorship has become an increasingly important part of the conversation as researchers work to develop therapies that are not only effective, but less toxic. Advances in precision medicine, targeted therapies, and immunotherapies offer promising opportunities, but understanding their long-term impact remains an important area of research.
Funding the Future of Research
Because childhood cancers affect relatively small patient populations, there is often limited commercial incentive for pediatric drug development. For that reason, federal funding, nonprofit investment, and collaborative research efforts play a critical role in advancing new discoveries. Dr. Weiner discusses the importance of sustaining support for clinical trials, research programs, and international collaborations that help researchers study rare childhood cancers across larger patient populations. It is also why organizations continue to invest in innovative research, helping investigators generate the data needed to pursue larger funding opportunities and move promising ideas forward.
Getting Involved
Advocacy is not limited to policymakers, researchers, or families. As Dr. Weiner explains, everyone can play a role. Whether it is sharing your story, meeting with elected officials, supporting childhood cancer organizations, or participating in advocacy events, every voice helps raise awareness and keep childhood cancer a priority. Progress often happens through the collective efforts of people who continue showing up, speaking out, and working together toward a common goal.
Why This Conversation Matters
Dr. Weiner’s story illustrates how progress in pediatric cancer is shaped by many different forces. Researchers drive discovery, advocates help shape policy, and supporters create the momentum needed to keep moving forward.
As CKc continues to invest in innovative pediatric cancer research, conversations like this provide important context for the work happening behind the scenes to improve outcomes for children with cancer. From funding research to advocating for better policies and survivorship care, every piece plays a role in creating a future where children not only survive cancer but thrive beyond it.
If you’re inspired by Dr. Weiner’s work and want to join our mission, visit cannonballkidscancer.org to learn more, donate, or get involved.
Know a survivor or advocate whose story needs to be shared? Email us at info@cannonballkidscancer.org to nominate a guest!
