St. Baldrick’s Inspires One Family’s Path to Advocacy
I will never forget the evening of Sunday, December 14, 2014, when the ER doctor and the pediatric neurologist on call entered our triage room and told us that our sweet eight-year-old girl had a huge brain tumor and life-threatening obstructive hydrocephalus. That moment left an indelible mark on my heart. The fear, the heartache, helplessness, and especially the unyielding desire to eliminate our baby’s pain and suffering were soul-crushing.
“Supergirl Julia” today
Childhood Cancer: A parent’s role, finding a voice, and a path through advocacy
This was written by Abby’s mom, Patty Furco.
Cancer can make you feel helpless. You want to fix things for your child and you can’t. During and after treatment, parents have little control. Yes, we can advocate for our kids, find the best medical team, the best treatments, hospital, and love on them. But how can we help?
I want to help others that are on the path we lived on for years. Witnessing the devastation and disruption that childhood cancer families go through, it’s impossible to not be changed by what I’ve seen and experienced. My journey as a hands-on, living it day to day, childhood cancer caregiver is over. My incredible daughter Abby, forever 15, passed away last October after a valiant 11-year battle with cancer and its effects. However, my role in the childhood cancer world is not over. I need to help. I do not want other families going through things that we did. How can I (and we as a childhood cancer community) make things better for children and families? How do we create more survivors? Where do we go from here?
Advocacy Is Making a Difference
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.
Patient Advocates – A Dream Team Video
Formerly known as the St. Baldrick’s – Stand Up to Cancer Pediatric Cancer Dream Team, this team is now the St. Baldrick’s EPICC Team (Empowering Pediatric Immunotherapies for Childhood Cancer).
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 #GiveKidsALifetime!
Read more on the St. Baldrick’s blog:
Finding a New Way to Advocate: Advocates are Going Virtual for Action Day 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.
Welcome to the New Administration and New Congress
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.
A Life-Changing Diagnosis Inspired My Passion for Advocacy
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 for a Virtual Day of Action on September 9
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.
Speak Up for Kids’ Cancer: February 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.
Older Posts »