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.”
My kids are alive. My husband is alive. We are here and we are together. That is what I tell myself when the anger and bitterness take hold. My husband served the United States Army for over 22 years. During that time, two of our children, Collin and Patrick, were diagnosed with cancer.
Patrick and Collin are brothers and were both diagnosed with childhood cancer. Patrick, now 13 years old, was diagnosed with stage II intermediate risk hepatoblastoma, a rare cancer of the liver, in 2010. Collin, now 11 years old, was diagnosed with acute lymphoblastic leukemia (ALL) when he was 2 years old.
While my husband fought on foreign soil, I served our nation as a military spouse and tackled childhood cancer with our kids in North Carolina. As a family, we sacrificed so much for this nation and yet we ask so little in return – just a chance for a brighter future. The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act can get us there.
February 4 is World Cancer Day. On this day, more than 700 kids will be diagnosed with cancer. But YOU can help. Here’s how …
When kids get cancer, a piece of their childhood is taken away. And even if they survive, their lives will never be the same.
But you can do something about it.
This World Cancer Day, let’s take childhood back from cancer.
Here are four easy ways you can help:
What is the St. Baldrick’s Foundation?
Nope, it’s not a foundation started by a saint with the unfortunate nickname “Bald Rick.”
St. Baldrick’s is a charity with a funny name that does one thing and does it well.
We fund grants for childhood cancer research through head-shaving events and other fundraisers across the globe, so kids with cancer can live long, healthy lives.
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.
2017 was a big year, full of breakthroughs, incredible stories and some pretty amazing achievements in the childhood cancer world. Join us as we reflect on St. Baldrick’s top 10 highlights of the past year — and make sure you give yourself a pat on the back, because much of this was possible because of YOU!
Are you ready to take a trip down memory lane? Here we go …
1) Passage of the RACE Act
That’s right — it’s time to take the plunge and register for a St. Baldrick’s event!
Every 2 minutes, a child is diagnosed with cancer.
YOU can make a difference for these kids.
Be a part of the world’s largest volunteer-powered charity for childhood cancer research. Get involved with a St. Baldrick’s event today!
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.
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