Legislation Affecting Cancer Research

Imagine training for a marathon while everyone around you has brand-new shoes, professional gear, and expert support, while you are left with worn-out shoes and the bare minimum. This is often what childhood cancer research funding looks like.

Each year, approximately 15,000 children in the United States are diagnosed with cancer, yet childhood cancer research receives less than 4% of national cancer research funding. The fight for new and improved legislative efforts focused on childhood cancer has been a long and uphill battle for many years. While the journey has been challenging, the dedication of families, survivors, and supporters continues to make an impact. In 2025, those efforts led to meaningful progress.

POSITIVE LEGISLATION MOMENTS

The Childhood Cancer Data Initiative (CCDI): On September 30, 2025, the United States Department of Health and Human Services doubled funding for the CCDI from $50 million to $100 million. This investment will help accelerate the development of better treatments and diagnostics through AI-driven research. President Trump signed the legislation after meeting with childhood cancer warriors and their families at the White House.

The Mikaela Naylon Give Kids a Chance Act: The Mikaela Naylon Give Kids a Chance Act is named in honor of osteosarcoma warrior Mikaela Naylon. The bill seeks to strengthen pediatric cancer drug research and expand access to new therapies for children with cancer. Although Mikaela passed away before the bill could become law, her advocacy continues to inspire this important effort. The bill passed the U.S. House of Representatives on January 22nd, 2026, and will be in Senate for a vote this week.

CUREFEST

Each September, during Childhood Cancer Awareness Month, thousands of families gather in Washington, DC for CureFest, an event dedicated to honoring children affected by cancer and making childhood cancer a national priority. Our very own Young Warrior, Greenleigh, and her family attended CureFest 2025. Greenleigh was diagnosed in 2023 with Philadelphia+ leukemia, a rare and complex form of the disease. Her mom, Stephanie, shared that uncertainty surrounding treatment options motivated her to attend. “That’s what prompted me to attend CureFest, to advocate for more research for my daughter,” Stephanie explained.

At CureFest, Stephanie and her family shared their story with legislators, explored Capitol Hill, and connected with other families walking similar paths. She described the experience as both beautiful and overwhelming, especially seeing Greenleigh’s photo on the “Fighter Wall,” recognizing familiar faces on the “Angel Wall,” and standing before hundreds of pairs of shoes representing children who have passed away from cancer. “It’s hard to put into words the magnitude of CureFest,” Stephanie recalled.

When asked what changes she hopes to see, Stephanie said, “More funding, of course. Who doesn’t want more funding? I would also really like to see more awareness for our children. Everyone goes pink in October, but what about September?” She emphasized the need for better research and better treatment options for children fighting cancer. In a country as advanced as the United States, she believes better treatment options should be a tangible reality for children fighting for their lives.

While the fight for advocacy and positive legislation for children battling cancer is far from over, the enormity of the childhood cancer community, from survivors and their families to friends and groups like the NCCS, are working tirelessly to create positive change. To learn more, visit our Helpful Resources page or explore CureFest for Childhood Cancer Awareness and Advocacy.