National Cancer Institute

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.

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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.

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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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The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act – the most comprehensive childhood cancer bill in history – was signed into law one year ago today!

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National Volunteer Week is a special time for the St. Baldrick’s Foundation, a donor- and volunteer-powered charity. So much of St. Baldrick’s success depends on the many people who give their time and energy raising money for the fight against childhood cancers. At St. Baldrick’s, we recognize that, without our many determined volunteers, we could never fund lifesaving research and clinical trials to help save kids’ lives.

That’s why we’re taking a few moments this National Volunteer Week to recognize some of our incredible volunteers. These people have shown remarkable passion for St. Baldrick’s and its mission of conquering childhood cancers once and for all. This week, we’ll be introducing you to a few people who represent many of the amazing volunteers who make innovative, lifesaving research possible.

Today, let’s meet two such individuals.

Ari Hen

At just 12 years of age, Ari is among our youngest volunteers. But don’t let her young age fool you – she’s very serious about raising money for St. Baldrick’s.

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