With 2018 winding down, it’s time to thank this year’s St. Baldrick’s Ambassadors for their help raising funds and awareness for pediatric cancer research. This group of five kids and their families inspired us with their unique stories of courage and their refusal to give up hope.
We’ll be welcoming a new group of Ambassadors in the new year. For now, let’s check in on the 2018 team to see how they’re doing and what they enjoyed about the Ambassador experience.
Our 2018 Ambassadors, from left: Brooks, Kellan, Maya, Zach, and Julia.
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.
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.
New St. Baldrick’s researcher Dr. Rintaro Hashizume in the lab at Northwestern University.
For a child diagnosed with an atypical teratoid rhabdoid tumor or AT/RT, the options for treatment can be sparse and survival uncertain. This rare, aggressive tumor generally strikes very young kids and though research has progressed, many of these kids live less than a year after diagnosis.
As the father of a kindergartener, this breaks Dr. Rintaro Hashizume’s heart.
Recently awarded a St. Baldrick’s Research grant, Dr. Hashizume wants to change that reality for kids with AT/RT and their families.
Honored Kid Sully loves to bike, run and wrestle with his brothers like any 11-year-old boy. He even tried out skiing over spring break. You’d never expect that just a year and a half ago, Sully woke up from surgery unable to walk.
Honored Kid Sully loves to bike, run, ride roller coasters and play with his brothers, Cashel and Finn. He wants to be a civil engineer when he grows up and dreams of designing the world’s best roller coasters.
It all started with back pain. It was innocuous at first. Hot baths would relieve Sully’s pain for a while, but it would come back with a vengeance. Finally, after many doctor’s visits, a lot of ibuprofen and no improvement, Sully’s parents, Dan and Jen, brought their son to the ER.
Hours later, the boy was in emergency brain surgery.
Marianne’s daughter, Melissa, is a 31-year survivor of pediatric brain cancer — essentially, she’s a miracle. But being a survivor doesn’t mean that the childhood cancer journey is over. Just the opposite. Here is Marianne with the story of a recent difficult chapter of Melissa’s ongoing struggle with the long-term effects of her treatment.
Marianne’s daughter, Melissa, with her nurse of 31 years. Melissa was diagnosed with brain cancer as a child and has since struggled with severe long-term effects from the intense treatment she received.
It’s been over 31 years and it can still make my heart race with fear. Cancer. Cancer. Cancer.
Melissa, my daughter, has lived independently for over 17 years, despite limitations caused by treatment for pediatric brain cancer. Seventeen years after finishing treatment, she began suffering through many seizures and 8 strokes. She was forced to quit her job with Disney and rely on disability benefits to pay her bills.
For Eric Haddad, head shaving isn’t just a one-time deal, because as the dad of a kid who fought brain cancer, he knows firsthand that the effects can last a lifetime. Next month, at the Rocky River event in Ohio, Eric will be shaving his head for the eighth time, while raising funds for research that he hopes will lead to better, safer treatments for kids with cancer.
During a past event, Eric shaves for his son, Shane.
When Shane Haddad was 4 years old, he started fighting childhood cancer. Eight years later, he hasn’t stopped fighting.
When you meet Julia, you know right away there’s something special about her. Perhaps it’s her bright smile or her exuberant joy and compassion for others. But this 11-year-old girl is super!
In fact, that’s her family’s favorite nickname for her — “Supergirl Julia” — given in honor of her courage and determined spirit during her cancer journey.
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.
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