Advocacy

A Life-Changing Diagnosis Inspired My Passion for Advocacy

by Shamari Ann Brazile, St. Baldrick’s Ambassador
September 8, 2020

Shamari is a 15-year old survivor, serving as a 2020 St. Baldrick’s Ambassador. She’s also a strong advocate for childhood cancer research funding and will be part of the Virtual Day of Action on September 9.  Please join the Speak Up for Kids’ Cancer advocacy action network to join her!

girl smiling

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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

Patient Advocates – A Dream Team Video

by St. Baldrick's Foundation
August 11, 2020

Patient advocates play a vital role in the  St. Baldrick’s — Stand Up To Cancer Pediatric Dream Team.

Patient advocates help to put a face on childhood cancer research. They humanize why the research is so critically important and translate that incredible work into language that’s more easily understood. Many are parents of kids who have fought cancer and one is a survivor herself. All are working to see the day when no family has to endure what they have.

Join us today and #DFYchildhoodCancers!

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Advocacy

Speak Up for Kids’ Cancer: February 2020

by St. Baldrick's Foundation
February 27, 2020

Read on for updates on the State of the Union, the President’s budget proposal, and events during Rare Disease Week on Capitol Hill.

Ambassador Shamari holding sign

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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

Congress’s Focus on Palliative and Hospice Care Shines New Light on a Variety of Issues for Pediatric Cancer Patients and Families

by St. Baldrick's Foundation
November 27, 2019

About 10 years ago, the St. Baldrick’s Foundation expanded its research portfolio to include funding for supportive care grants. Since then, it has funded more than 40 innovative studies in this area. Supportive care, according to the National Cancer Institute, refers to care given to improve the quality of life of patients who have a serious or life-threatening disease.

Our supportive care grants have encompassed a wide variety of topics, including studies focused on psychosocial screening, survivors’ nutrition and physical activity, chemotherapy-induced neuropathy, and mindfulness training — just to name a few. These grants are in sync with needs across the spectrum of cancer in children and adolescents/young adults (AYA) from diagnosis through active treatment to post-treatment survivorship and life-long health surveillance. As many have said, the cancer experience doesn’t end when treatment ends. Supportive care can improve the quality of life for its entire duration.

For this National Hospice and Palliative Care Awareness Month, we’ve decided to look at some of the reasons why this category of care is so very important to pediatric cancer.

kid holding signHonored Kid, Tacey, showing her support for PCHETA, at the 2019 Action Days in Washington, D.C..

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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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