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
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.
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.
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!
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.