Run Tough for Team Joshua aims to bring awareness to rare pediatric brain cancer
Joshua McFadden of Buffalo Grove was a healthy, active and sweet 11-year-old boy.
Everything changed on Feb. 2, 2016, when a persistent headache revealed a tumor in his brain. Joshua was diagnosed with DIPG (diffuse intrinsic pontine glioma), a rare and lethal form of pediatric brain cancer, with only 200-400 children diagnosed in the U.S. each year.
The resulting diagnosis left Joshua and his family devastated. Joshua succumbed to this terrible disease on Jan. 15, 2017.
This year, Joshua's family is hosting a Run Tough for Team Joshua event to benefit The ChadTough Foundation. We spoke to Joshua's mom, Lisa Dluger, about the event and the foundation it benefits.
Q: What is the ChadTough Foundation? Give a brief overview of what the organization does and who you serve.
A: The ChadTough Foundation was founded in 2015 after the passing of 5-year-old Chad Carr, who had a brain tumor called DIPG (diffuse intrinsic pontine glioma).
DIPG is an inoperable brain tumor that currently has a 0% survival rate. It most commonly strikes children between ages 5 and 7. Brain tumors are the leading cause of cancer-related deaths in children, and DIPG is responsible for approximately 50% of all pediatric brain cancer deaths each year.
Our Challenge: Approximately 4% of the taxpayer-funded National Institutes of Health's annual budget is directed toward ALL pediatric cancers. Almost all DIPG research has been funded by private foundations like The ChadTough Foundation, working collaboratively to change the future for DIPG families.
Our Opportunity: When Chad was diagnosed, the standard of care for DIPG hadn't changed in more than 50 years. But due to the aforementioned research currently being funded, there is real hope for a cure for DIPG. Discoveries are being made on an almost monthly basis: new abilities to leverage targeted therapies, new drugs, new drug-delivery methods, new radiation protocols, more collaboration than ever before.
The world of DIPG research is entirely different from what it was when Chad was diagnosed just six years ago.
So, the short answer is that our mission is to inspire and fund game-changing research to discover effective treatments for pediatric brain cancer, with an emphasis on DIPG.
Q: Where do the majority of your donations come from?
A: We raise money in several ways: through events and fundraisers that we organize and run, plus their sponsorships; through third-party events hosted by people who want to support our mission; and through general giving, which predominantly comes from the friends, family members and supporters of families affected by DIPG and other pediatric brain cancers, as well as other people who support the fight to cure pediatric brain cancer.
Q: How much have you raised for research?
A: The ChadTough Foundation has funded more than $6 million in research since its inception, and in 2019 alone committed to funding 22 grants that support 26 researchers at 17 different institutions around the world, for a total of more than $1.9 million.
Q: Tell us about the Run Tough for Team Joshua event.
A: My husband, Dave Dluger, Joshua's stepdad, and I put together Team Joshua in honor of his 16th birthday, which is in September.
Q: How can people participate?
A: People can sign up by using the link, runsignup.com/Race/MI/Saline/RunToughforTeamJoshua.
Before Sept. 4, the cost is $30, which includes a T-shirt. After that date, the cost is $35 and T-shirt sizes can't be guaranteed.
The virtual event is Sept. 26.
Q: How can readers help if they can't participate in the event?
A: People who can't participate can use the link to make a donation.
Q: What else would you like readers to know?
A: We want the readers to know they can continue to raise money for DIPG.
Tammi and Jason Carr of Ann Arbor, Michigan, started their foundation in honor of their son Chad, who also had DIPG. We watched their virtual gala May 17, and afterward I reached out to Tammi and said I wanted to do something to honor my son with their foundation.
I spoke to Tammi over the phone and offered to do a walk. Tammi had me get in touch with Amy Lepore, director of events for The ChadTough Foundation. She told me I would have access to the Race Signups and our goal was 100 people. We are so close to this goal.
My husband Dave and I decided every year we would pick a different foundation and honor Joshua in some way. After we watched the virtual gala, I knew this year we would raise money in honor of Joshua, DIPG and The ChadTough Foundation.
Run Tough for Team Joshua
Who: Benefits The ChadTough Foundation for pediatric cancer research
When: Virtually Sept. 26
Cost: $30 by Sept. 4; $35 after that date
Register: runsignup.com/Race/MI/Saline/
Did you know?
• Cancer is the No. 1 disease killer of children in America.
• Brain tumors are the leading cause of cancer-related deaths in children.
• DIPG is responsible for 15% of ALL pediatric cancer deaths each year.
• Only roughly 4% of the taxpayer-funded National Cancer Institute's (NCI) annual budget is directed toward pediatric cancer (not brain cancer, but all pediatric cancer).
To learn more about the ChadTough Foundation, go to www.chadtough.org.