My name is Erica, and I never imagined that I would have a childhood cancer story to tell.
I’ll never forget the moment I heard the words “your son has cancer”—it hit our family like a ton of bricks. Now I’m sharing my son Aiden’s story because I believe in the critical need to support childhood cancer research with the St. Baldrick’s Foundation. And this holiday season, you can join me in giving hope to the next child faced with a cancer diagnosis.
First, cancer took away my little boy’s smile. Then, it took his life.
Each year, the St. Baldrick’s Foundation picks five kids to serve as Ambassadors. In this role, they represent the thousands of kids affected by childhood cancers and remind us of the importance of supporting childhood cancer research.
Take any group of kids and they’ll all have their own way of talking, their own opinions on books, movies, and video games, their own favorite foods.
But there is one thing the St. Baldrick’s 2019 Ambassadors have in common: childhood cancers. Beyond that, they share the support of loving families and a desire to inspire others to raise money for childhood cancer research.
Our 2019 Ambassadors, from left to right: Aiden, Arianna, Sullivan, Gabby, and Brooke.
With the holiday season upon us and another year drawing to a close, it’s a great time to reflect on some of the major research accomplishments of doctors and scientists whose work on childhood cancers benefited from the support of St. Baldrick’s donors like you.
There’s much to be thankful for. All things considered, 2018 was a remarkably successful year for childhood cancer research, with much of that success spurred on by grants funded by St. Baldrick’s. Of course, none of this would have been possible without our generous donors.
Dr. Kohanbash’s cutting-edge research on ependymomas is supported by a Hero Fund in memory of Henry Cermak, who passed away in 2008 after a long, 2-year fight that included many surgeries, chemo regimens, and 93 rounds of radiation.
Honored Kid Madelyn was diagnosed with DIPG in 2010. A fashionista with a big spirit and an equally big heart, Maddy was an inspiration to those around her. She passed away in November 2011 after an 18-month battle with DIPG.
No child has ever survived a diffuse intrinsic pontine glioma brain tumor, commonly called DIPG.
This aggressive pediatric brain cancer multiplies in the brainstem, which controls some of our most basic functions for living – our breathing, heart rate, blood pressure and ability to swallow and speak. And because the cancer is so intertwined with its delicate surroundings, DIPG is often inoperable.
A DIPG diagnosis and a zero percent survival rate has remained the reality for kids and families for decades.
But what if there might be hope? What if that hope came from within the child’s own body?
For kids diagnosed with a rare and fatal type of brain tumor called DIPG, or diffuse intrinsic pontine glioma, there is no cure and treatments are heartbreakingly scarce. St. Baldrick’s researcher Dr. Mark Souweidane is on a mission to change the bleak statistics on DIPG survival. Learn about his groundbreaking work so far and what’s coming next.
BREAKING NEWS: The promising results of Dr. Souweidane’s groundbreaking research have just been published in the peer-reviewed journal Lancet Oncology! Supported by St. Baldrick’s, this Phase 1 clinical trial involved the injection of a cancer-fighting drug directly into the tumors of children with DIPG. There were exciting results — no serious side effects or dose-limiting toxicities were observed in the kids who participated, which means that the therapy has been deemed safe for use in pediatric patients. Thanks to St. Baldrick’s support, this promising trial will now expand to multiple institutions, giving hope to kids with this currently incurable, fatal tumor and to their families.
DIPG life expectancy is devastatingly short — with many kids dying within two years of diagnosis. Dr. Mark Souweidane wants to change that.
For kids with DIPG, treatment with radiation just lets them live a little while longer. Traditional chemo doesn’t work because of the blood-brain barrier. Tumor removal with surgery is out of the question, because the cancer is intertwined with the delicate tissues of the brainstem, which regulates breathing and other vital functions.
So, what does a doctor working on DIPG do to help these kids?
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
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.
What is DIPG?
DIPG stands for diffuse intrinsic pontine glioma. It is a type of high-grade glioma, a brain tumor that comes from cells called glia that surround, protect, and otherwise support the nerve cells in the brain.
DIPG is always found in the brainstem. This part of the brain controls many basic functions like breathing and swallowing, as well as muscles that help with speech and eye movements.
It is most common in elementary school-aged children, but it can affect children of any age.
Learn more about childhood cancer >
About 250 kids in the U.S. are diagnosed with DIPG each year.
When Kristine’s daughter McKenna was diagnosed with a rare pediatric brain tumor that no child has ever survived, she learned there was no known cure because of a lack of funding for research. You can help — get involved.
McKenna was diagnosed with DIPG, a deadly brain tumor, when she was 7.
Childhood cancer was never even a consideration in our minds before that scan, but less than 24 hours and one MRI later, we found ourselves surrounded by doctors at the nurses’ station in the PICU waiting to hear the diagnosis.
It was in the midst of that chaos that we were told our daughter had diffuse intrinsic pontine glioma, or DIPG, an extremely rare pediatric brain tumor that typically strikes between the ages of 5 and 7, infiltrates the brain stem, and has a 0% survival rate.
When St. Baldrick’s Fellow Dr. Adam Green learned about high-grade gliomas and met kids diagnosed with the brain tumors, he knew he had to help. And today he’s doing just that. Read on for more about Dr. Green, his exciting research, and how St. Baldrick’s helped him make it happen.
Dr. Adam Green in his lab at the University of Colorado with his lab members, from left to right: Rakeb Lemma, Dr. Green, John DeSisto and Patrick Flannery. Dr. Green’s research is funded in part by the Luke’s Army Pediatric Cancer Research Fund, a St. Baldrick’s Hero Fund created in memory of Luke Ungerer, a little boy who died of brain cancer.
Dr. Adam Green distinctly remembers the first time he gave a family the news that their child had an aggressive, fatal brain tumor. It was an experience that’s hard to forget.
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