St. Baldrick’s Foundation Celebrates the Childhood Cancer STAR Act Signed into Law

LOS ANGELES (June 5, 2018) – The St. Baldrick’s Foundation, the largest private funder of childhood cancer research grants, is pleased to announce that the Childhood Cancer Survivorship Treatment Access and Research (STAR) Act was signed into law by President Donald Trump today after careful review and approval by both the Senate and House.

After three years of anticipation from childhood cancer research advocates, the Childhood Cancer STAR Act will finally be put into motion, providing researchers with the critical funding needed to advance pediatric cancer research and surveillance, work toward less toxic treatments and provide enhanced resources for survivors.

“The STAR Act is a true testament to the dedication of St. Baldrick’s, and its supporters and partners in the childhood cancer community to create change for kids with cancer,” said Mike McCreesh, chairman of the St. Baldrick’s board of directors. “This legislation will bring hope to many families. We are grateful to our champions on the Hill for their commitment to kids with cancer and we will continue to fight together with them to ensure the STAR Act’s full funding and implementation.”

The Childhood Cancer STAR Act will:

• Expand opportunities for childhood cancer research – The STAR Act will authorize the National Cancer Institute (NCI) to expand existing efforts to collect biospecimens for childhood cancer patients enrolled in NCI-sponsored clinical trials, so researchers can better analyze and compare clinical, biological and demographic information.
• Improve childhood cancer surveillance – The bill will support the advancement of a national childhood cancer registry where childhood cancer incidences can be documented, tracked and shared.
• Improve quality of life for childhood cancer survivors – As many as two-thirds of childhood cancer survivors suffer from late effects of their disease or treatment, including secondary cancers and organ damage. This legislation will enhance research on the late effects of childhood cancers and improve long-term care for childhood cancer survivors.

The STAR Act also places at least one pediatric oncologist on the National Cancer Advisory Board, giving childhood cancer a voice when funding decisions are determined.

“Today is a historic day – the most comprehensive childhood cancer bill is now law. By elevating the fight against childhood cancer at the National Institute of Health, and giving them more tools to be more effective in this fight, we will find the best solutions and care for our children,” said Senator Michael McCaul. “None of this would have been possible without all of the advocates and survivors who continue to share their stories and motivate Members to act.”

The STAR Act will help kids like St. Baldrick’s Ambassadors Julia Alexander and Zach Swart. Both are passionate advocates and recently joined hundreds of supporters on the Hill to fight for kids’ cancer research.

Julia, 11, was diagnosed with a grade II ependymoma in her brain when she was 8 years old. She bravely endured three major brain surgeries, five minor surgeries, eight rounds of chemotherapy and two months of radiation. Due to her cancer and treatment, Julia has had to learn to write again and still struggles with her fine motor skills.

“When St. Baldrick’s first announced that the STAR Act passed Congress, I immediately shed a tear. It meant so much to us that our nation’s leaders are actively joining us in the fight against this wretched disease,” said Julia’s mom, Melissa. “What overjoys us most about the STAR Act is the survivorship component. Cancer parents obviously worry about our children during treatment, but we are terrified that they won’t have access to proper healthcare for the numerous late effects they suffer in survival. The STAR Act will help ensure there are programs in place for Julia and other pediatric cancer survivors in the years to come, which lifts a huge burden off parents’ shoulders.”

Zach, 16, was first diagnosed with acute lymphoblastic leukemia (ALL) at 6 years old. Faced with limited treatment options after his second relapse, Zach was declared cancer-free after being treated on a clinical trial led by a St. Baldrick’s-funded researcher.

“Our son, Zach, has fought cancer three times and we are deeply concerned about the possible late effects of the toxic chemotherapies that he has endured to save his life from childhood cancer,” said Zach’s mom, Nancy. “The STAR Act will enhance critical research on the late effects of toxic therapies for childhood cancer survivors and will promote progressive models of care for their continued health and development.”

The passing of the STAR Act would not have been possible without support from the childhood cancer community, including coalition members, organizations, families affected by childhood cancer and members of Congress.

“St. Baldrick’s is proud to have played a leading role in the advocacy strategy that led to the passage of this breakthrough legislation,” said Kathleen Ruddy, CEO of the St. Baldrick’s Foundation. “While the Childhood Cancer STAR Act is a significant accomplishment toward furthering children’s cancer research efforts, it is only the beginning. We must now focus on making sure the bill is fully funded. We look forward to working closely with our Hill Champions to create a larger impact on the lives of kids with cancer.”

Help get the STAR Act fully funded by tweeting at your representatives today.

For more information about St. Baldrick’s involvement in leading advocacy efforts for the STAR Act, or to join the Speak Up For Kids’ Cancer network, visit www.StBaldricks.org/advocacy. To learn more about St. Baldrick’s, visit www.StBaldricks.org, and connect on Facebook, Twitter, YouTube or Vimeo.

About St. Baldrick’s Foundation
As the largest private funder of childhood cancer research grants, the St. Baldrick’s Foundation is leading the charge to take childhood back from cancer. St. Baldrick’s funds some of the most brilliant childhood cancer research experts who are working to find cures and better treatments for all childhood cancers. Kids need treatments as unique as they are – and that starts with funding research just for them. Join us at StBaldricks.org to help support the best childhood cancer research, no matter where it takes place.

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