Researcher Works to Crack the DIPG Code with Help from McKenna Claire

by Erinn Jessop, St. Baldrick's Foundation
December 15, 2017
McKenna Claire was 7 years old when she was diagnosed with DIPG

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.

Learn more about McKenna and her cancer journey from her mom, Kristine >

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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What I Learned From My Daughter’s DIPG Diagnosis

by Kristine Wetzel
September 21, 2017

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 Claire

McKenna was diagnosed with DIPG, a deadly brain tumor, when she was 7.

In January 2011, our healthy, active, intelligent 7-year-old daughter, McKenna, came down with what we thought to be a stomach virus. After a week of doctor visits, seeing her left eye begin to stray and her mouth begin to droop, we insisted on having a CT scan.

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.

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18-Year-Old Cancer Fighter Gives Back by ‘Painting the Town Gold’

by Erinn Jessop, St. Baldrick's Foundation
May 9, 2017

When Todd Schultz shaved with St. Baldrick’s in 2013, he had no idea that just a few months later he’d be diagnosed with kids’ cancer. Read on for more about Todd’s diagnosis and how he’s raising awareness, plus vital dollars for research, as the founder of a St. Baldrick’s non-profit partner — Painting the Town Gold.

Todd Schultz is the 18-year-old founder of Painting the Town Gold

Todd Schultz is the 18-year-old founder of the St. Baldrick’s partner Painting the Town Gold.

Two weeks before his diagnosis, Todd Schultz was on the football field. The 13-year-old was a linebacker — strong, fit and ready to do what it took to keep the other team from stopping the ball.

He was lifting weights to get even stronger and acting as the umpire at kids’ baseball games. His hair was just growing back after shaving it with St. Baldrick’s in honor of a little girl he knew who was diagnosed with children’s cancer.

Todd was healthy, with his freshman year of high school just around the corner.

Then everything changed.

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St. Baldrick’s and the Miracle Party Foundation Celebrate Kids With Cancer

by Jeremy Bliler
October 9, 2014

St. Baldrick’s Foundation has a new partnership with the Miracle Party Foundation, known for an annual celebration in Denver, Colorado for children and families impacted by childhood cancer. Join in the celebration by helping fund childhood cancer research — donate today.

Kids walk the gold carpet at the Miracle Party for families impacted by childhood cancer

Kids walk the gold carpet at the Miracle Party for families impacted by childhood cancer. Photo by Brody Hall.

In a hospital room a dream began. What started as an end-of-chemo party has become one of the largest events in the United States for children fighting cancer. We take a trip to Denver, Colorado on September 20, right in the middle of Childhood Cancer Awareness Month.

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Grapplers Putting Childhood Cancer Into Submission

by Natalie Stamer, St. Baldrick's Foundation
August 14, 2014

You don’t have to shave your head to raise money for childhood cancer research. You can Do What You Want instead!


Competitors from the 2014 Spring Tap Cancer Out BJJ Open in Stratford, CT. The tournament helped raise $54,000 for St. Baldrick’s.

With precise and careful technique, a small and relatively weak person can defend themselves against, and even overcome, a larger and stronger assailant.

That could easily be the description of a child fighting cancer with the best available treatment, but it’s also the concept behind Brazilian jiu-jitsu (BJJ) — a martial art that focuses on grappling and ground fighting until the opponent “submits” to defeat by “tapping out.”

And now the two have become one. The BJJ community is coming together to put childhood cancer into submission — they want to Tap Cancer Out.

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Kids with Cancer

Father Writes ‘Bryce and the Blood Ninjas’ to Help Son Overcome Acute Lymphoblastic Leukemia

by Natalie Stamer, St. Baldrick's Foundation
July 29, 2014

Help all kids with cancer overcome their illness. Fund childhood cancer research.

kids cancer book

Erec-Michael Weber published the story he told his son about his childhood cancer treatment to help kids and families dealing with illnesses everywhere.

Imagine the scene: There has been an invasion of cancer robots and they must be stopped — to the rescue come the blood ninjas!

This story could excite the child in all of us, but it specifically helped Bryce, son of “Bryce and the Blood Ninjas” author Erec-Michael Weber, as he battled his own diagnosis of acute lymphoblastic leukemia (ALL).

Bryce was diagnosed in August 2012 when he was 4. While research advancements meant that Bryce had a high chance of survival, Erec knew that undergoing childhood cancer treatment would be difficult for his son. Bryce would have to confront the very real fact that a deadly disease was inside his body.

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‘Together We Are Better’: St. Baldrick’s and McKenna Claire Foundation Fund Pediatric Brain Tumor Research

by Kristine Wetzel
July 18, 2014

The McKenna Claire Foundation is supporting a St. Baldrick’s research grant to help kids with brain tumors. Kristine, whose daughter McKenna died of a brain tumor, explains why. See all the 2014 Summer Grants.

McKenna and her mom, Kristine Wetzel

Kristine with her daughter McKenna. McKenna was diagnosed with a brain tumor in January 2011 and died six months later.

In January 2011, our daughter McKenna was diagnosed with an extremely rare and aggressive form of brain cancer called diffuse intrinsic pontine glioma, or DIPG.

Upon diagnosis, we were told that there was no hope for her survival and that the average life expectancy was 9-18 months. Because it is so rare, there had been little research done on this disease in the past 50 years, with virtually no change in treatment protocols or life expectancy.

For that reason, when we lost McKenna just six short months after diagnosis, we decided to do two things.

The first was to donate her tumor to Monje Lab at Stanford University, where a cell line was developed for use by researchers around the world. The second was to start a foundation in her name with the specific purpose of supporting progress in the field of pediatric brain cancer research.

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Ty Louis Campbell Foundation Gives New Hope to Children With Brain Tumors

by Cindy Campbell
July 17, 2014

The Ty Louis Campbell (TLC) Foundation is joining St. Baldrick’s to fund pediatric brain tumor immunotherapy research. Cindy, co-founder of the TLC Foundation, shares why this partnership is giving them renewed hope.

Ty with his parents, Lou and Cindy Campbell

Cindy and Lou Campbell founded the Ty Louis Campbell Foundation after their 5-year-old son, Ty, died of a brain tumor.

Nothing is more powerful than hope.

Hope fueled my passion and gave me the strength to care for my son during his childhood cancer treatment without coming undone at the seams. Without hope, I would have grieved his loss for over a year before he actually took his last breath.

And, without the hope for a cure that I continue to strive for 21 months after his loss, I don’t know that I would find the will to get out of bed at the dawn of every new day I face without him.

Like every parent who hears the words, “Your child has cancer,” I hit the Internet the second I learned of his diagnosis, a rare pediatric brain tumor called atypical teratoid rhabdoid tumor (ATRT). I had such tremendous hope that my Ty would be one of the 20% that survived the devastating diagnosis over five years, and that he would be one of the 10% that didn’t relapse. We nicknamed him SuperTy with certainty that his super strength would prevail.

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Ty Louis Campbell Foundation Gives $25,000 to St. Baldrick’s for Childhood Cancer Research Funding

by Rebecca Bernot, St. Baldrick's Foundation
May 19, 2014

We’re working together to fill the funding gap in children’s cancer research. Will you help?

The Ty Louis Campbell Foundation presented a check to the St. Baldrick's Foundation to help fund childhood cancer research

Lou and Cindy Campbell of the Ty Louis Campbell Foundation with Zach Semenetz (second from left), St. Baldrick’s Volunteer Event Organizer, and Susan Heard (second from right), St. Baldrick’s Senior Director of Partnerships and Major Gifts.

Every year when Zach Semenetz organizes a St. Baldrick’s event to raise money for children’s cancer research, he makes sure to find a kid with cancer in his community for his event to honor.

Having an Honored Kid every year helps us stay connected to the cause and really show people the true meaning of why we’re there,” Zach said.

This was his seventh year as a Volunteer Event Organizer (VEO) and his ninth time shaving his head for St. Baldrick’s. And this year, his event at Claddagh Bar and Grill in Mahopac, New York, honored Ty Louis Campbell, also known as SuperTy, who died from brain cancer just days after his fifth birthday.

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St. Baldrick’s Partners With Tap Cancer Out to Fund Childhood Cancer Research

by St. Baldrick's Foundation
March 26, 2014

Tap Cancer Out logo
You probably wouldn’t look to a sport where teammates and opponents are thrown, tripped, choked, and forced to tap out to find one of the most unique and innovative nonprofits. But that’s where you’ll find Tap Cancer Out, a Brazilian jiu-jitsu nonprofit dedicated to raising awareness and funding for cancer-fighting organizations.

Tap Cancer Out was founded in 2011 by Jon Thomas, a Brazilian jiu-jitsu practitioner in Connecticut. “I noticed that while courageous people were sacrificing time and energy to make this world a better place, I was doing nothing,” Jon said. “I didn’t necessarily know how, but I knew I needed to do something.”

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