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