Families

Research Saved Ori’s Life

by Erinn Jessop, St. Baldrick's Foundation
December 5, 2017

You helped save a child’s life. Meet Honored Kid Ori. He is in remission, because of a research breakthrough supported by St. Baldrick’s – and generous donors like you. Read on to learn more about this amazing kid and why he and his family are thankful for YOU.

Ori smiles during treatment

Ori amazed his parents with his strength and positive attitude, even after years of treatment.

When Ori’s parents were packing to go to the hospital for the first visit – the first of many – they told the 2-year-old boy that they were going on an adventure.

And that’s how both he and his family have viewed his cancer journey ever since.

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Childhood Cancer

Your 2017 Holiday Gift Guide: Presents That Give Back to Childhood Cancer Research

by Kristine Malicse, St. Baldrick's Foundation
November 27, 2017

Stuck on what to give someone this holiday season? Give them the gift that gives back! Check out the great presents that help fund childhood cancer research.

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Families

Kymriah’s Journey From Lab to Lifesaver: The Phase 1 Trial [Part Two]

by Erinn Jessop, St. Baldrick's Foundation
November 22, 2017

Over a series of four blogs — read the first blog here — we are tracing the path of Kymriah, a recent immunotherapy and gene therapy breakthrough for kids with high-risk leukemia, like Honored Kid Austin. This 9-year-old pioneer was one of the first patients to receive this revolutionary type of CAR T cell therapy, which was made possible because of the hard work of the St. Baldrick’s – Stand Up To Cancer Dream Team.


Continuing from Part One, Austin’s bone marrow transplant has failed and we find his parents at a dead end in terms of treatment options — until a ray of light appears.

Austin in his hospital bed

During his treatment, Austin always just wanted to be a kid. After finishing a chemotherapy and radiation treatment, he’d often joyfully run out to his backyard to play on the swings.

The options were few and the stakes were huge, but the choice was clear for Austin’s parents. With their 4-year-old son months away from death, they had to choose hope – hope in the form of a clinical trial testing a promising gene therapy called Kymriah.

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Families

Kymriah’s Journey From Lab to Lifesaver: The Phase 1 Trial [Part One]

by Erinn Jessop, St. Baldrick's Foundation
November 21, 2017

Kymriah. For kids with high-risk leukemia, those seven letters spell hope. But what is this lifesaving ‘living drug’? And how did this exciting new therapy come to be? Buckle your seat belts, because today we are starting an epic journey – a journey made possible by St. Baldrick’s supporters like you. Over four blogs, we’ll follow the path of this immunotherapy breakthrough – from the Phase 1 clinical trial to its recent FDA approval — and see the process through the eyes of the kids, families and St. Baldrick’s researchers who made this revolutionary research happen.


In Part One of our blog series, meet St. Baldrick’s Honored Kid Austin, a now 9-year-old cancer survivor whose last chance at life was the first human trial for Kymriah.

Austin wears a face mask

Honored Kid Austin was diagnosed with a high-risk form of acute lymphoblastic leukemia when he was 2 years old.

Kim Schuetz can’t forget the moment she saw the symptoms of her son’s childhood cancer. It was May 2011 and Austin was nearing his third birthday. Austin and his grandpa were playing together when the man noticed something odd. He called Kim over and together they crouched by the living room couch to look at large bumps on the sides of Austin’s neck.

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Research

2017 Infrastructure Grants: Building New Cures for Kids with Cancer

by St. Baldrick's Foundation
November 14, 2017

Time to sip on that hot chocolate, wear your favorite pair of fuzzy socks and cozy up to great news that will warm your heart — and you helped make it happen!

Announcing our 2017 Infrastructure Grants

Today, we are proud to announce the 2017 St. Baldrick’s Infrastructure Grants, totaling $2.2 million awarded to 39 institutions across the United States.

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News

And the International Arceci Award Goes to…

by Erinn Jessop, St. Baldrick's Foundation
October 13, 2017

Usually, we pick one international winner of the Robert J. Arceci Innovation Award, but what happens when there are two equally deserving researchers with big ideas and big hearts for kids with cancer? Read on to find out!

Dr. Franck Bourdeaut and Dr. Jan-Henning Klusmann

After being nominated for the International Robert J. Arceci Innovation Award, (left) Dr. Franck Bourdeaut and (right) Dr. Jan-Henning Klusmann were both selected by a committee of experts and are being presented with the award today at the annual conference for the International Society of Paediatric Oncology.

Dr. Robert Arceci was a passionate innovator who dreamed big. He was a pioneer who knew that kids with cancer deserve better than what doctors can offer them and that breakthroughs are born from taking risks.

That’s why the international winner of the award established in his memory – the Robert J. Arceci Innovation Award – is given the resources and the freedom to follow their curiosity, pioneering spirit, and their passion for kids’ cancer research, wherever it leads.

Except this year, it’s winners of the Robert J. Arceci Innovation Award!

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Research

St. Baldrick’s Scholar Searches for Leukemia’s Weak Spots

by Erinn Jessop, St. Baldrick's Foundation
October 9, 2017

It is said that to defeat an enemy, you must know them — and that’s exactly what St. Baldrick’s Scholar Dr. Grzegorz Nalepa is doing. The enemy? Childhood cancer. His weapon? Genomics — the study of all the genes within an organism, like a human child with cancer for instance. Who is winning? Read on to find out. (Hint, hint…it’s the good guy.)

Dr. Nalepa with a young patient

St. Baldrick’s Scholar Dr. Grzegorz Nalepa amuses a young patient by making her the doctor, instead of him.

For St. Baldrick’s Scholar Dr. Grzegorz Nalepa, childhood cancer treatment can’t be one-size-fits-all. To be successful, it needs to be personal.

That’s why this physician-scientist studies what makes everyone unique, including kids with cancer – genes.

With support from St. Baldrick’s and a deep passion for the field of genomics, Dr. Nalepa is studying how the genetic changes, or mutations, present in kids with leukemia can be exploited to create targeted therapies against that cancer, with few side effects.

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Head-Shaving

This Dedicated Shavee Won a Cruise…Will You Be the Next Winner?

by Erinn Jessop, St. Baldrick's Foundation
September 30, 2017

They say the early bird gets the worm, but at St. Baldrick’s, the early bird gets a cruise! That’s right – it’s time for the St. Baldrick’s Participant Sweepstakes, when participants who register and raise money early get a chance at the trip of a lifetime. Read on for tales from last year’s lucky shavee and the details on how YOU can be a winner.

Jim and his family at the beach during their cruise

Six-time shavee Jim and his family won big through the St. Baldrick’s Participant Sweepstakes — they won a weeklong Disney cruise! Here they are enjoying the beach at Castaway Cay, Disney’s private island in the Bahamas.

When Jim Varagona got an email saying he had won a free trip, he was skeptical. Did he get hacked? Was it a scam?

“I read the email and it looked legit, but you can’t be too sure when being told you’re a prize winner,” he said.

Then he listened to a voicemail he had just received. It was from the St. Baldrick’s Foundation. A six-time shavee and passionate fundraiser for kids’ cancer research, Jim had been randomly picked as the winner of the 2016 St. Baldrick’s Participant Sweepstakes.

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Facts

5 Facts About Childhood Cancer Survivors

by Jonathan Fish, M.D.
September 29, 2017

facts about childhood cancer survivors
Dr. Fish is a St. Baldrick’s Scholar at Steven and Alexandra Cohen Children’s Medical Center of New York. His research focuses on improving the health of childhood cancer survivors.

1. Over 80% of 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. There were ~380,000 survivors of childhood and adolescent cancer in the United States as of 2010, and that number is expected to exceed 500,000 by the year 2020.

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News

Dream Team Discovers Potential New Weapon Against Neuroblastoma

by Becky C. Weaver, Chief Mission Officer, St. Baldrick's Foundation
September 28, 2017

Last week, in the pages of the medical journal Cancer Cell, St. Baldrick’s researchers announced a discovery that could radically transform treatment for kids with neuroblastoma – a new immunotherapy drug candidate that harnesses the immune system to fight cancer.

SBF research development neuroblastoma

Neuroblastoma is a cancer that begins in the nerve tissue outside the brain, usually in a child’s abdomen. It strikes very young children, up to about age 7, and is the most common cancer diagnosed in infants. Only about 50% of patients survive the high-risk form of neuroblastoma.

All of this makes this new targeted immunotherapy for neuroblastoma especially good news, but it gets even better.

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