The St. Baldrick’s Foundation has announced its 2018 Infrastructure Grant recipients. In total, the grants amount to more than $1.7 million and will be spread across 29 US-based institutions.
For more than a decade, Dr. McLean has been participating in head-shaving events with the St. Baldrick’s Foundation. That’s right – not only does Dr. McLean help fight cancer at Wake Forest Baptist Health in Winston-Salem, N.C., he’s also one of many researchers who help raise money for childhood cancer research by having his own head shaved clean.
It’s a fact the friendly doctor laughs off by pointing out he doesn’t have a lot of hair to shave away in the first place.
“The first time I shaved my head, I was nervous,” Dr. McLean joked. “But then I did it, and I quickly realized, you know, it’s not that big of a deal – my hair is pretty short anyways.”
Dr. Tom McLean, winner of a 2018 Infrastructure Grant, has shaved his head for St. Baldrick’s 10 times.
An ependymoma is a cancerous tumor that emerges in the brain or anywhere along the spine, from the neck all the way down to the lower back. These tiny tumors take shape in cells found in the spinal cord or the brain’s ventricles, cavities that contain fluid responsible for cushioning our brain and preventing injury.
Ependymomas tend to start out very small and grow slowly over time – sometimes many years – meaning they can be hard to catch. Early symptoms range from seizures to headaches and blurry vision. Because there are many other conditions with these same symptoms, it can be difficult to diagnose ependymomas, especially in kids, who may have trouble explaining how the issue affects them.
Dr. Kohanbash’s St. Baldrick’s grant 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.
I was recently invited to serve as a patient family advocate for the St. Baldrick’s / Stand Up to Cancer Pediatric Cancer Dream Team representing the National Cancer Institute. If you’re not familiar with the Dream Team and what they’re doing, it’s worth taking a few minutes to read up on the project.
In short, it’s a multi-institutional effort to accelerate cures for childhood cancer by sharing the skill, knowledge and unique resources of 8 top-notch research institutions.
Carlos Sandi with his son, Honored Kid and Ambassador Phineas.
Imagine being born with an oversized tongue that makes breathing and eating a constant chore. Imagine starting life with an oversized pancreas that pumps an excessive amount of insulin, creating a wide range of unexpected health issues.
In fact, try to imagine being born with an abnormally large organ of any kind – tongue, liver, kidneys – and how this might affect your life.
Children with Beckwith-Wiedemann syndrome, otherwise known as BWS, live with these challenges every day. And it’s not the only health concern they face.
They’re also at a much higher risk of developing childhood cancer.
St. Baldrick’s Fellow Dr. Elliot Stieglitz is a big reader, but not in the way that you might think. Over three years, he read the DNA of one hundred children with JMML, a rare leukemia, and he discovered something major. Read on to learn how his discovery could lead to better treatments for kids with this rare disease.
RESEARCH DEVELOPMENT: Dr. Elliot Stieglitz has brought his St. Baldrick’s-funded research to a Phase 2 clinical trial for kids with relapsed JMML. In this trial, which is first of its kind in the United States, researchers will be testing whether an oral targeted medication used in the treatment of melanoma in adults slows or even kills leukemia cells in kids with persistent JMML. In addition, Dr. Stieglitz developed a test that predicts which JMML patients have the best prognosis and therefore need less intense therapy. He’s now in the process of establishing a clinical test that will eventually be available to patients. This test will help kids get just the treatment they need and avoid damaging long-term effects from harsh therapies. Keep up the great work, Dr. Stieglitz!
For St. Baldrick’s Fellow Dr. Elliot Stieglitz, being a pediatric oncologist is the perfect blend of emotional satisfaction and intellectual stimulation.
His heart is with the kids and their families, guiding them through the toughest time in their lives. His head is in the lab, trying to find better treatments for childhood cancer.
Dr. Elliot Stieglitz is a St. Baldrick’s Fellow at the University of California, San Francisco. He’s researching ways to help kids with JMML who don’t respond to standard treatment. He explains JMML symptoms, treatment options, and how your support is moving research forward.
What is JMML?
Juvenile myelomonocytic leukemia (JMML) is a type of blood cancer that affects young children.
Why do kids get cancer? That’s the question we asked Dr. John Maris, who co-leads the St. Baldrick’s Foundation – Stand Up to Cancer Pediatric Cancer Dream Team. Researchers like Dr. Maris are working hard to find the answer to this question because it could hold the key to cures for kids’ cancer.
Why do kids get cancer? In short, there’s no single, easy answer.
The answer is complicated, said Dr. Maris.
Honored Kid Micah is ready for his close-up during a hospital stay in 2015, when he was taking part in a St. Baldrick’s-funded clinical trial at Children’s Hospital of Los Angeles (CHLA) for neuroblastoma, a type of childhood cancer.
For kids with cancer and their families, clinical trials mean hope. Clinical trials offer a chance for survival when all other options are exhausted. They offer kids in treatment and survivors the possibility of a better future with fewer side effects. Most of all, for all kids with cancer today and in the future, clinical trials help scientists get closer to cures.
With your help, St. Baldrick’s has been an essential part of this lifesaving research phase since 2005 — every St. Baldrick’s donor has helped make these trials possible for more than 100,000 children with cancer.
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?
Older Posts »