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.
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.
Federal Funding for Childhood Cancer Research: A Conversation with Dr. Ned Sharpless, Director of the National Cancer Institute
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.
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!
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.
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 to #ConquerKidsCancer!
Read more on the St. Baldrick’s blog:
Read on for updates on the State of the Union, the President’s budget proposal, and events during Rare Disease Week on Capitol Hill.
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.
(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.
Congress’s Focus on Palliative and Hospice Care Shines New Light on a Variety of Issues for Pediatric Cancer Patients and Families
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.Honored Kid, Tacey, showing her support for PCHETA, at the 2019 Action Days in Washington, D.C..
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