Advocacy

Advocacy Is Making a Difference

by St. Baldrick's Foundation
May 26, 2021

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 finally 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

Finding a New Way to Advocate: Advocates are Going Virtual for Action Day 2021

by St. Baldrick's Foundation
April 18, 2021

This week is National Volunteer Week – a week dedicated to celebrating YOU, our tireless volunteers who have risen to the challenges of the past year. Even though the pandemic presented us with many obstacles, it also gave us new opportunities for creativity and ingenuity.

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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

Join Us for a Virtual Day of Action on September 9

by St. Baldrick's Foundation
September 3, 2020

Join us on September 9 for a Virtual Day of action to urge Congress to fund the Childhood Cancer STAR Act for another year! Sign up for the St. Baldrick’s Speak Up for Kids’ Cancer advocacy action network to receive email updates for how to participate.

invitation graphic

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Advocacy

Speak Up for Kids’ Cancer: January 2020

by St. Baldrick's Advocacy
January 30, 2020

We hope you are having a great start to the new year! Read on for legislative updates, upcoming meetings and events, and ways to get more involved as we hit the ground running in 2020.

kid with sign

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Advocacy

St. Baldrick’s Foundation Applauds Increased Funding for Childhood Cancer Research

by St. Baldrick's Foundation
December 20, 2019
capitol hill

(December 20, 2019) – Washington, DC – St. Baldrick’s Foundation, the nation’s largest charitable funder of childhood cancer research grants, released the following statement from Kathleen Ruddy, Chief Executive Officer, St. Baldrick’s Foundation, regarding the approval of increased funding for childhood cancer research and support for the implementation of the Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act in the final Fiscal 2020 spending package.

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Advocacy

Happy Anniversary, Childhood Cancer STAR Act! Signed into Law One Year Ago Today

by Danielle Leach
June 5, 2019

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!

2013 St. Baldrick’s Ambassador Matthias advocating on Capitol Hill

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Advocacy

The Mommas Mean Business – And Ten Years Later, They’re Still Raising Money for Pediatric Cancer Research

by St. Baldrick's Foundation
May 23, 2019

Editor’s Note: We’re delighted to give the floor to Rebekah, who is our guest blogger and a leader of the 46 Mommas. In this blog post, she shares what she has learned about helping kids with cancer, and keeping her own sisterhood strong.

A collage showing 9 group photos of the 46 Mommas group.

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Advocacy

Childhood Cancer Action Days 2019: Scott and Nancy Head to Washington

by St. Baldrick's Foundation
April 16, 2019

The Alliance for Childhood Cancer Action Days in Washington, D.C., is an opportunity for members of the childhood cancer community – from kids and their families to health care professionals and volunteers – to advocate for childhood cancer issues before Congress.

St. Baldrick’s Honored Kid, Scott, a 10-year-old whose cancer is in remission, attended Action Days with his mom Nancy and has provided us with the following report on his experiences in Washington.

Collage showing Scott and other childhood cancer advocates in Washington, D.C.Scott (left) attended Childhood Cancer Action Days in Washington, D.C., in late March.

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Advocacy

The Childhood Cancer STAR Act Passes and is Signed Into Law

by St. Baldrick's Foundation
June 5, 2018

After years of advocating on Capitol Hill, the Childhood Cancer STAR Act passed and was signed into law! See how the STAR Act will help kids with cancer and childhood cancer survivors live long, healthy lives.

STAR Act logo

What is the childhood cancer STAR Act?

The STAR Act stands for the Survivorship, Treatment, Access and Research (STAR) Act. It is the most comprehensive childhood cancer legislation ever taken up by Congress.

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