"Progress in pediatric research is not a luxury — it is a lifeline," says cancer mom to Congress
At a Senate appropriations hearing on biomedical research held last week, advocate Emily Stenson testified about the lifesaving importance of federal funding for research. Her daughter Charlie was diagnosed with stage four cancer when she was just three years old.
"Today, I am proud to say Charlie is once again cancer-free. She started preschool in February and is back to the joyful chaos of five-year-old life — coloring, playing dress-up, and chasing her siblings,” Emily told the Committee, with her daughter sitting beside her.
“These moments are not guaranteed for kids like Charlie but they are made possible by the research Congress chooses to prioritize and invest in.”
Two days later, the White House released its 'skinny budget' request for fiscal year 2026, which calls for a massive $18 billion in cuts for the National Institutes of Health (NIH) - approximately 40% of its current budget. These cuts would devastate the nation's healthcare infrastructure and destroy momentum in the fight against cancer.
The president’s proposal also calls for collapsing NIH’s 27 institutes and centers into five new ‘focus areas’. It proposes eliminating cancer prevention and control efforts at the Centers for Disease Control (CDC). We’ve already joined with our Cancer Leadership Council colleagues to express that ending the Division of Cancer Prevention and Control at the CDC would undermine America’s progress in the fight against cancer and challenge efforts to improve cancer care and quality of life for all.
This follows dramatic cuts and terminations that have already taken place at the CDC, FDA, and NIH due to a major restructuring of the Department of Health and Human Services (HHS). We’ve expressed alarm about these changes here on our blog and with our coalition partners. In this CLC statement, we warn about the looming negative impacts on current and future cancer research, the health of patients in treatment right now, and the ‘brain drain’ of our most promising young investigators either leaving the field entirely or moving their research out of the country.
Medical research has always had strong bipartisan support, and kids with cancer need that support now more than ever. At the same hearing Emily testified at, Members of Congress from both sides of the aisle expressed their support for families like hers.
“If clinical trials are halted, research is stopped, and laboratories are closed, effective treatments and cures for diseases like Alzheimer's, type one diabetes, childhood cancers, and Duchenne's muscular dystrophy will be delayed, or not discovered at all. We must preserve, and strengthen America's leadership for the sake of families all across this country,” said Committee Chair Susan Collins, a Republican Senator from Maine.
And from Washington Senator Patty Murray, Democrat, Vice-Chair of the Committee: “Make no mistake — the United States is the world leader in medical research. But creating that was not an accident, and maintaining it is not inevitable. It is a choice we make through our investments, one that has paid off on a scale that cannot be measured.”
We thank Sens. Collins and Murray for shining a spotlight on the vital importance of continued, uninterrupted investment by the federal government in biomedical research. Childhood cancers are rare diseases, and clinical research is not economically valuable for biopharmaceutical investment. Therefore, the discovery and promise of newer therapies with fewer harmful side effects absolutely depend on an ongoing research investment by the NIH and its National Cancer Institute (NCI).
“We cannot afford to slow down. Not now. Not when so many lives hang in the balance,” said Emily to the Committee. “Cuts to medical research are not just numbers on a spreadsheet — they are stolen chances, unfinished stories, and futures left unrealized. Progress in pediatric research is not a luxury — it is a lifeline. And for families like mine, it is deeply personal.”
Ms. Stenson disclosed that her daughter is enrolled in two ongoing survivorship studies made possible by federal funding. They will benefit Charlie and improve our understanding of survivorship. Today there are over 500,000 survivors who face a lifetime of health challenges as a result of their cancer or its treatment.
It’s imperative that every Member of Congress realizes that cancer research is an issue their constituents care deeply about. Please join us in asking your Senators and Representative to reject these proposed cuts and continue to stand behind biomedical research and its legacy of creating hope for millions of families facing devastating diseases, including the 15,000 children diagnosed with cancer in the U.S. every year.
The White House is expected to release a more detailed budget in the coming weeks, and we will continue to keep advocates like you updated and informed.
Next week, we’ll be watching the Senate HELP Committee’s hearing on the FY26 budget with HHS Secretary Robert F. Kennedy, Jr. You can tune in here for live coverage on Wednesday, May 14th. The House Labor-HHS Appropriations Subcommittee is also scheduled to meet the same day about FY26 appropriations.
Advocates like Emily who are willing to speak up and share their story with the world are our greatest strength in the fight to protect cancer research funding. If you’ve got a story to share, we want to hear it! We may use these stories as part of our advocacy and awareness efforts on social media, on Capitol Hill, and/or with the general public.