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.
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 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 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.
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. Photo by Brody Hall.
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.
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.
Help all kids with cancer overcome their illness. Fund childhood cancer research.
Erec-Michael Weber published the story he told his son about his childhood cancer treatment to help kids and families dealing with illnesses everywhere.
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.
‘Together We Are Better’: St. Baldrick’s and McKenna Claire Foundation Fund Pediatric Brain Tumor Research
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.
Kristine with her daughter McKenna. McKenna was diagnosed with a brain tumor in January 2011 and died six months later.
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.
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.
Cindy and Lou Campbell founded the Ty Louis Campbell Foundation after their 5-year-old son, Ty, died of a brain tumor.
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.
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.
“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.
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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