Advocacy

Why the Pediatric Cancer Dream Team Incorporates Patient Advocates into the Research Process

by St. Baldrick's Foundation
October 16, 2019

“I’m an accidental tourist in the childhood cancer world,” says Patrick Sullivan, who chairs the Patient Advocacy committee for the St. Baldrick’s Foundation — Stand Up 2 Cancer Pediatric Cancer Dream Team. “It’s not a place I’d ever thought I’d be in, until I heard that my son had rhabdomyosarcoma in 2007.”

Patrick and Finn in slide.
Patrick Sullivan and his son, Finn.

Patrick’s role is more than just tourist, though. When the Pediatric Cancer Dream Team was created, its goal was to push the envelope, to marry the emerging fields of genomics and immunotherapy to create targeted therapies for cancers. It was also important to the Dream Team to involve patient advocates, to inspire and work alongside the researchers, to maximize the Dream Team’s success. Along the way, each researcher was paired with a young investigator on the team, to help the advocates better understand the science and to help the young investigators better communicate their work to families and the lay public.

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Advocacy

This Childhood Cancer Awareness Month, Join Us to #DFYchildhoodCancers

by St. Baldrick's Foundation
September 4, 2019

September is here, or as we call it: Childhood Cancer Awareness Month (CCAM) – which, as you’d imagine, is a pretty big deal at the St. Baldrick’s Foundation, the #1 private funder of pediatric cancer research. Every year at this time there are blogs, social posts, invitations to change your Facebook profile or use a hashtag on Twitter related to CCAM – but this year you’ll also be seeing something new.

Although CCAM helps build awareness of pediatric cancers, there’s a need for a more permanent rallying cry. We don’t want September to be one month when people tweet and share Facebook updates about kids with cancer and then move on – after all, somewhere in the world, every two minutes a child is diagnosed with cancer. We purposely created this campaign to bring this reality front and center.

First, though, a little background.

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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

St. Baldrick’s Advocacy Highlights of 2018

by St. Baldrick's Foundation
December 14, 2018

The St. Baldrick’s Speak Up for Kids’ Cancer advocates played an instrumental role in facilitating monumental legislative achievements for kids with cancer in 2018.

Collage of images showing St. Baldrick's advocacy efforts in 2018.

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Advocacy

St. Baldrick’s 2018 Holiday Gift Guide: Gifts That Give Kids Hope!

by St. Baldrick's Foundation
November 20, 2018

The holiday season is about giving – and what better gift for your loved ones than something that helps a great cause, like taking childhood back from cancer. Not only are the items below awesome gift ideas, but a portion of each sale goes to the St. Baldrick’s Foundation.

That means every item sold helps fund lifesaving research and clinical trials that can find new and better treatments for kids with cancer.

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Advocacy

Teen Saved by Science Speaks Up for Kids’ Cancer Research

by Zach Swart
July 3, 2018

Back in April, Ambassador Zach was finally healthy enough after his bone marrow transplant to go out in public. What did he decide to do after that momentous milestone? He joined the hundreds of advocates speaking up for kids’ cancer research on Capitol Hill during Childhood Cancer Action Days. Here’s his recap of that trip and the big moments that have come since …

Ambassador Zach on Capitol Hill

Ambassador Zach poses for a photo in front of the United States Capitol building and its famous dome during Childhood Cancer Action Days in April.

I received a bone marrow transplant over a year ago, and I was so glad that I was healthy enough to speak on Capitol Hill this past April as a St. Baldrick’s ambassador. As an ambassador, I am a face and a voice for childhood cancer, and while in Washington, D.C., my family and I represented thousands of children and families who are affected by childhood cancer. I was lucky enough to share my story and talk about the importance of funding childhood cancer research through the STAR (the Survivorship, Treatment, Access and Research) Act, the most comprehensive childhood cancer legislation ever taken up by Congress. With the recent passage of the STAR Act, we have come so far, but we still have so far to go.

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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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Advocacy

Action Days 2018: Families Speak Up For Kids With Cancer on Capitol Hill

by St. Baldrick's Foundation
May 10, 2018

More than 200 childhood cancer advocates, including St. Baldrick’s families and Honored Kids, joined the Alliance for Childhood Cancer’s 7th Annual Childhood Cancer Action Days on April 23-24.

Group Photo

This two-day event in Washington, D.C. brought advocates to Capitol Hill to share their stories and thank their representatives for:

  • Passing the STAR Act unanimously in the Senate — the most comprehensive childhood cancer bill ever introduced to Congress
  • Approving a $3 billion increase for medical research at the NIH
  • Approving the RACE Act to encourage the development of new drugs to treat childhood cancer

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