Childhood cancer knows no borders – but neither does research. In fact, funding kids’ cancer research saves the lives of kids across the globe. This International Childhood Cancer Day, meet Honored Kid Shauntelle, a 19-year-old from Ireland who left everything familiar behind so she could have her best chance at life.
Thanks to a successful fundraising campaign, Shauntelle and her family were able to move from their home in Ireland to Houston, Texas for cancer treatment.
Honored Kid Shauntelle lives about an hour south of the city of Dublin in Ireland. Four years ago, when she was 15 years old, she noticed rashes popping up on her body. She thought she was scrubbing too hard in the shower or was allergic to her body wash.
“For a while, I just didn’t think to speak up. It was a big pain and a big part of my life, but it was a bit embarrassing,” Shauntelle said. “I wasn’t sure if I was doing something wrong.”
From its inaugural Phase 1 clinical trial through its successful Phase 2 trial, we have traced the path of Kymriah, a recent immunotherapy and gene therapy breakthrough for kids with high-risk leukemia and few options, like Honored Kids Austin and Ori. (Read the whole series here.) Now, with a historic decision made in August, we are at the end of our story, but not at the end of the story of Kymriah. Instead, Kymriah’s is just beginning – and starting a new chapter of hope for kids with cancer.
Austin (left) and Ori (right) are both alive today thanks to Kymriah and their participation in the Phase 1 and Phase 2 trials.
On August 30, 2017, big news rippled through the childhood cancer community. On that late summer day – before the start of Childhood Cancer Awareness Month – the FDA made a historic move that changed the landscape of childhood cancer research forever.
Over a series of four blogs — catch up with parts one and two about the Phase 1 trial — we are tracing the path of Kymriah, a recent immunotherapy and gene therapy breakthrough for kids with high-risk leukemia, like Honored Kid Ori.
After relapsing for the second time and with his cancer spreading to his nervous system, Ori’s best chance at life was a Phase 2 trial of this experimental CAR T cell therapy. With a sunny attitude and staggering strength of spirit, Ori gave this new treatment a shot – with astonishing results.
Ori was in cancer treatment for much of his young life and throughout the journey, his strength and positive attitude have been remarkable. “He has been through so much, but has done it all with a great attitude and a smile on his face,” said his mom, Kaye.
When a child with cancer relapses the first time, their treatment options shrink. But when a child with cancer relapses again, their options and chances at survival don’t just shrink – they’re nearly extinguished. That is what happened to Ori.
Top: St. Baldrick’s researcher Akiko Shimamura (left) in her lab with a colleague at Fred Hutchinson Cancer Research Center in Seattle. During her St. Baldrick’s-supported study, Dr. Shimamura studied a rare group of inherited bone marrow disorders that are associated with heightened risk of cancer. Bottom: Based at the University of Medicine and Dentistry of New Jersey, St. Baldrick’s researcher Scott Kachlany tested a new therapeutic agent for kids with ALL during his St. Baldrick’s-supported study.
The St. Baldrick’s Foundation makes a bold statement: We support the most promising childhood cancer research, wherever it takes place. And because we grant more childhood cancer research than any non-government funder, it’s crucial that those dollars go to the right projects. But how do we pick the right projects?
Rising to that challenge is a widely respected grant application and scientific review process created by the St. Baldrick’s Foundation.
McKenna Claire was 7 years old when she was diagnosed with a rare brain tumor called DIPG. The McKenna Claire Foundation was established in her memory and in 2013, St. Baldrick’s partnered with the McKenna Claire Foundation to fund DIPG research, like the work done by Dr. Rameen Beroukhim at the Dana Farber Cancer Institute.
Honored Kid McKenna Claire was bright, spirited, and loved soccer and gymnastics. McKenna was full of grace, joy and grit through it all, even as her childhood cancer progressed and she could no longer run across a soccer field, jump on a trampoline, talk or swallow. She died just six months after her diagnosis with a rare, fatal type of brain tumor called DIPG – weeks before her birthday. She would have been 8 years old.
Stories like this are why St. Baldrick’s researcher Dr. Rameen Beroukhim studies DIPG, otherwise known as diffuse intrinsic pontine glioma. In fact, McKenna’s photograph hangs in his lab.
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 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.
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.
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.
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.
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.
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!
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.
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!
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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