Advocacy

Advocacy Is Making a Difference

by St. Baldrick's Foundation
May 26, 2022

The childhood cancer community is filled with passionate, dedicated advocates rallying together to make a difference for kids with cancer and childhood cancer survivors. Thanks to the tremendous advocacy of the childhood cancer community, Congress, the Administration, and the National Cancer Institute (NCI) are taking notice.

Over the last five years, childhood cancer advocates have successfully lobbied for meaningful policies and changes. Back in 2018, Congress unanimously passed the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act, the most comprehensive childhood cancer legislation in history.

And the community’s advocacy didn’t stop there. Each year since the STAR Act was signed into law, Congress fully funded the programs STAR created, providing $30 million each year in new resources for childhood cancer. Now Congress is poised to extend the STAR Act further. Just last month, childhood cancer champions introduced H.R. 7630/S. 4120, the Childhood Cancer STAR Reauthorization Act to allow the programs from the STAR Act to continue for five more years.

On the heels of the success of the Childhood Cancer STAR Act, the Childhood Cancer Data Initiative (CCDI) was created in 2019 with the goal of funding $50 million in new childhood cancer research funding each year for ten years. As with the STAR Act, the childhood cancer community has successfully advocated for full funding for CCDI each year. That means Congress has provided $270 million in new resources for childhood cancer since the STAR Act and CCDI were created.

These accomplishments in advocacy are also changing the research landscape at NCI. For many years, the childhood cancer community has rallied around a particularly startling statistic: Less than 4% of the National Cancer Institute’s (NCI) budget funds childhood cancer research. This number so strikingly sums up the frustration about the lack of investment in treatments for kids with cancer and the slow pace of research. The 4% statistic has been a rallying cry for the childhood cancer community to demand better for kids with cancer – and after years of advocacy for more federal research funding, that 4% statistic has indeed changed. Thanks to the tremendous advocacy of St. Baldrick’s advocates and the childhood cancer community, NCI has nearly doubled its investment in childhood cancer research in recent years

The groundswell of advocacy and the investments foundations like St. Baldrick’s makes in early-career researchers and groundbreaking research have paved the way for more funding for childhood cancer research at NCI. In federal fiscal year 2020, NCI spent more than $500 million on childhood cancer for the first time, representing nearly 8% of its total budget that year.

But the work doesn’t stop here. The St. Baldrick’s Foundation will continue to keep up the pressure for more funding to develop new, safer therapies for kids with cancer. Join us today by urging your members of Congress to cosponsor the Childhood Cancer STAR Reauthorization Act, which will allow the programs – and funding – from the STAR Act to continue for five more years.

Click the link below, or text STAR4KIDS to 52886 to take action today.

Ask Your Lawmakers to Cosponsor the STAR Reauthorization Act Today!

Read more on the St. Baldrick’s blog:


Advocacy

Welcome to the New Administration and New Congress

by Campbell Sullivan, a 2021 St. Baldrick’s Foundation Ambassador
January 20, 2021

Our hearts are broken at the loss of Campbell, a 2021 St. Baldrick’s Ambassador. She died on February 22, 2021 due to a brain hemorrhage brought on by CIC-DUX4 Sarcoma. Campbell was remarkable in every way and will always be an inspiration.

Originally posted January 20, 2021

I voted for the first time in November, but this is not my first-time letting Congress know how I feel. In 2018 I lobbied on Capitol Hill with a group of childhood cancer warriors, siblings, and advocates. I shared my story with three members of Congress and pushed for legislation to help kids with cancer. Having gone through treatment for more than three years at this point, I was especially determined to cast my ballot in this year’s presidential election. As a new voter, I am also looking forward to being part of the St. Baldrick’s Speak Up for Kids’ Cancer Network so I can raise my voice for kids with cancer and childhood cancer survivors in the year ahead.

Ambassador Campbell

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Advocacy

Federal Funding for Childhood Cancer Research: A Conversation with Dr. Ned Sharpless, Director of the National Cancer Institute

by St. Baldrick's Foundation
January 15, 2021

As the largest non-government funder of childhood cancer research grants, and as a leader in childhood cancer advocacy, the St. Baldrick’s Foundation has a deep interest in the work that the federal government is doing to advance treatments. As part of the St. Baldrick’s Foundation Impact Series, on January 14, 2021, St. Baldrick’s Foundation CEO Kathleen Ruddy had a conversation with Dr. Ned Sharpless, Director of the National Cancer Institute (NCI), about the NCI’s broad pediatric cancer portfolio.

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