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.
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.
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.
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
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.Scott (left) attended Childhood Cancer Action Days in Washington, D.C., in late March.
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.
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.
The STAR Act — the most comprehensive childhood cancer bill ever introduced on Capitol Hill — was just passed by the Senate and now heads to the House, backed by the support of Members of Congress, families, survivors and advocates like YOU. Why is this bill so important? Rachael Kittleson, the mom to a teen who had a pediatric brain tumor, will tell you …
Rachael (middle) smiles with Kelsey (right) and her little sister, Avery.
There is nothing in life that prepares you for the words, “Your daughter has a large tumor on the left side of her brain.” There is nothing in life that prepares you for telling your husband devastating news about his girl. And there is certainly nothing in life that prepares you for how to keep your teenage daughter calm as you say, “You have to go to the hospital, but you are going to be fine.”
I think back on watching my daughter Kelsey perform on stage or playing on the soccer and lacrosse fields. I think of the cancer breaking into her brain silently and lying in wait, like a burglar.
Kelsey was an energetic teenager and an accomplished athlete, playing both soccer and lacrosse.
For me, three years ago was such a time of pride and excitement as I watched our oldest daughter start to come into her own. She was an honors student, athlete, lead in the school musical, tutor and musician. While she was a normal teenage girl excited about things like her dress and date for her 8th grade dance, there was something else going on with Kelsey. The cancer was barely perceptible and easily dismissed, but it would eventually, most cruelly, take everything from her a piece at a time.
As Kelsey’s spring schedule was in full swing, the tumor started to make itself known in innocuous ways – ways I easily brushed aside as a mother. I had no idea this was the beginning and the beast would be in full control in just a couple of months. As Kelsey’s symptoms progressed, an MRI was ordered for August 27, 2015. That day would change our lives forever.
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