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.
1. Each year, more children diagnosed with cancer will be cured, joining the growing population of long-term childhood cancer survivors.
Thanks to advances in chemotherapy, radiation and surgical techniques, more children and adolescents are being cured of cancer every year. Today, there are over 420,000 survivors of childhood cancer in the United States, representing approximately 1 in 750 young adults, and that number is expected to exceed 500,000 by the year 2020.
This two-day event in Washington, D.C. brought advocates to Capitol Hill to share their stories and thank their representatives for:
Pediatric oncologist and scientist Dr. Alex Kentsis isn’t afraid to dig into what makes childhood cancer tick, especially if his hard work results in better treatments for kids with cancer. That’s why he’s our newest winner of the St. Baldrick’s 2018 Robert J. Arceci Innovation Award – a unique three-year, $250,000 grant that gives researchers the freedom to follow the science, without the restrictions of traditional grants. Read on to learn about the innovative work he’s already doing for kids with cancer and how the Arceci award will move his promising research forward.
Dr. Alex Kentsis is a pediatric oncologist and scientist at Memorial Sloan Kettering Cancer Center, a father of two and the newest Robert J. Arceci Innovation Award winner. Unlike traditional grants which come with restrictions and are specific and constrained in their scope, this three-year, $250,000 grant allows researchers the freedom and flexibility to follow their passion for kids’ cancer research, their curiosity and the science, wherever it leads.
Dr. Kentsis is a big fan of asking, ‘Why?’ – especially when it comes to the fundamental nature of childhood cancer. Unlike adults, kids haven’t had time to damage their DNA. They haven’t aged, smoked or stayed out in the sun too long — so why do they get cancer?
Moms are the best. Especially moms who shave their heads to help take childhood back from cancer!
Mother’s Day is around the corner, and we want to give some extra love to all the awesome moms who’ve given up their hair to raise money for kids’ cancer research.
Today until May 6, show us your #BestBaldMom photos for a chance to win St. Baldrick’s swag and a limited edition, co-branded St. Baldrick’s + Love Your Melon beanie!
I have something exciting to tell you, but first, here’s something I heard and quickly scribbled down during a meeting about research priorities: “It’s like we caught lightning in a bottle – and you just don’t know when that will happen again.”
That was one of our expert advisers talking about the amazing, incredibly fast and impactful work of the Stand Up to Cancer – St. Baldrick’s Pediatric Cancer Dream Team, funded jointly by the two organizations from 2013 through 2017. It was such a perfect description, it has stuck with me for more than a year.
This team of 150 researchers from eight institutions across North America has been working on new immunotherapy treatments for childhood cancers. In less than four years, their work is already saving lives.
Honored Kid Austin was diagnosed with a high-risk form of acute lymphoblastic leukemia when he was 2 years old. Now a survivor, he was one of the first kids treated on a trial of the immunotherapy Kymriah, which was developed with help from the Dream Team.
Every one of the experts who had looked closely at the team’s work agreed that this was work that must continue. To me, it was only natural for St. Baldrick’s to make that happen. And by St. Baldrick’s, I mean you – our donors and volunteers who make the funding possible.
So, I’m thrilled to announce that the Dream Team is back – with a new name and a continuing determination to find cures for childhood cancers.
The St. Baldrick’s – Stand Up to Cancer Pediatric Cancer Dream Team will continue from 2018 through 2022, with primary support from St. Baldrick’s.
With its recent commitment of $500,000 for the Target Pediatric AML initiative, the St. Baldrick’s Foundation adds another chapter to its long story of support for innovative and impactful research in childhood acute myeloid leukemia (AML).
While great progress has been made over many decades to help children survive the most common childhood cancer – acute lymphoblastic leukemia (ALL) – the same has not held true for children with AML.
St. Baldrick’s is helping change that.
A child’s eyes see the love in their parents’ faces and the joy of their siblings. They see the vibrant colors in a box of crayons and the sparkle of rain on a flower. Sight helps kids navigate their classroom, their playground and their world. But what happens when pediatric cancer attacks that precious sense?
With retinoblastoma – an eye cancer in children that is usually diagnosed before the age of 3 years old – a kid can lose their vision to the cancer and their long-term health to the harsh treatment. They can even lose their lives.
That’s what tumor immunologist Dr. Vanessa Morales-Tirado and her St. Baldrick’s Summer Fellow, Zachary Goldsmith, are working to change.
Dr. Vanessa Morales-Tirado, with the University of Tennessee, works with Zachary Goldsmith, a St. Baldrick’s Summer Fellow and PhD candidate, in the lab.
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.
What happens when you give a researcher funding and freedom to follow the science?
Just ask the Robert J. Arceci Innovation Award winner Dr. Kimberly Stegmaier. For her, that powerful combination of funding and freedom led to the discovery of a promising combination of molecules that could change the lives of kids with Ewing sarcoma, the second most common bone cancer found in children.
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