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.
Brain cancer is now the leading cancer killer in kids, and St. Baldrick’s has just partnered with the National Brain Tumor Society to do something about it. Read on for more about what this partnership is going to do about brain cancer and how it could revolutionize childhood cancer research forever.
Many kids with leukemia are now getting better and surviving their cancer, thanks to great strides in childhood cancer research over the years. But unfortunately, a lot of kids with brain tumors are not seeing the same results.
In fact, brain cancer just outpaced leukemia to become the number one cancer killer in children, according to a new report from the Centers for Disease Control and Prevention.
At 12 years old, Hope dreamed big. She wanted to be the next Asian Taylor Swift, a doctor, a nurse, or maybe even a minster. She had a lifetime of plans to make a dreams to chase until she was diagnosed with DIPG, a pediatric brain tumor with no known cure. Her mom tells her story.
There is a song that Garth Brooks sings that includes the lyrics, “Some of God’s greatest gifts are unanswered prayers.” That is exactly what Hope was to our family.
Raymond Chang is a student at Weill Cornell Medical College studying to be a doctor. Thanks to a St. Baldrick’s Summer Fellow grant, he’ll be spending his summer researching DIPG, an inoperable and always fatal pediatric brain tumor. Read what Raymond has to say about what led him to DIPG research.
The first time I visited Dr. Souweidane’s lab, I was drawn to a series of banners hanging in the foyer.
Instead of the presentation posters or published work that decorate most lab hallways, these were portraits of beaming kids — tissue donors from the Children’s Brain Tumor Project. Below each portrait were dates of birth and death, and the type of brain tumor that each had been diagnosed with.
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