When it comes to diseases considered “rare” by the medical community, family foundations are pivotal in driving research dollars. Diffuse Intrinsic Pontine Glioma (DIPG) is a prime example of this.
While DIPG is “rare” — approximately 200-400 children in the US alone are diagnosed annually — the lack of options for those diagnosed is unacceptable. To watch a child go through progression of the disease is heartbreaking and something no parent should ever have to go through.
Tammi and Jason Carr and Jenny and Mark Mosier have each lost a son to DIPG. Their sons, Chad and Michael, were diagnosed the same month – September 2014. Chad was three days shy of turning four and Michael had just turned six.
“He was diagnosed on September 4 of 2014 — a week after his birthday and he started kindergarten,” said Jenny of Michael.
“Thinking back to the day of diagnosis, it is so surreal when you’re in the moment. Being diagnosed with cancer is one thing — it is horrible and life-changing — but to hear that your child has a brain tumor with essentially no chance of survival … there really are no adequate words to describe the feeling.”
Jenny’s sentiment is similar to what Tammi shared on the ESPN feature aired November 2015, the week following Chad’s passing.
“You think cancer and you think, ‘What do we have to do to fight this? and ‘What’s the treatment plan – what’s the protocol?’” said Tammi. “And when you hear there isn’t any for this disease … that takes the wind out of you.”
A Shared Passion
From the moment the Carr and Mosier families connected, they had a shared vision and passion for fighting DIPG.
“We just gelled with them from the get-go,” said Tammi. “We’ve done a lot of things that way throughout this journey — things that feel right and we know that God’s telling us the right thing to do.
“Our relationship with them has felt right from day one.”
So when the Carrs learned of the medical advisory board the Mosiers were putting together for their foundation, Defeat DIPG, they were interested in getting involved.
“The medical advisory council they’ve put together is incredible,” said Jason. “These are some of the best minds out there working to eradicate DIPG. As soon as they told us what they were doing, we knew we had to be a part of it.”
Defeat DIPG has a Scientific Advisory Council made up of Darell D. Bigner, MD, PhD (Duke University School of Medicine), Suzanne Baker, PhD (St. Jude Children’s Research Hospital), Oren J. Becher, MD (Northwestern University’s Feinberg School of Medicine), Cynthia Hawkins, MD, PhD (Hospital for Sick Children), and Duane Mitchell, MD, PhD (University of Florida College of Medicine).
The Council “reviews grant applications and makes recommendations to ensure that the Michael Mosier Defeat DIPG Foundation uses its resources to fund the most promising DIPG research projects.”
As the advisory council was being put together, the Mosiers and the Carrs had many conversations around the idea of joining together to fund projects.
Now, heading into 2018, that partnership is becoming a reality.
“It is really an honor to work with Tammi and Jason to fight against this horrible disease,” said Jenny. “There are few people who understand what it is like to lose a child to DIPG, and, unfortunately, the Carr family is with us in that group.
“From that common experience with our precious boys we have developed a valued friendship and a partnership with trust and shared purpose.”
A Larger Team of Fighters
The Mosiers and Carrs aren’t the only families involved in this project.
The Michael Mosier Defeat DIPG Foundation has a network with three others families: Amanda and Brandon Huffman (Avery Huffman — Avery Huffman Defeat DIPG Foundation), Alexis and Peter Olympia (Connor Olympia – Connor Man Defeat DIPG Foundation), and Katie Gaskin (Anthony Pappalas – Anthony’s Avengers Defeat DIPG Foundation.
The ChadTough Foundation also has a partner family, Tom and Amanda Ruddy, who lost their son, Tommy.
“We really see this as not just the Carrs and Mosiers, but a partnership including all six of the families working as part of our foundations,” said Mark. “We think very highly of the Ruddys and look forward to working in partnership with them as well.”
“It’s great to have so many families coming together,” added Jason. “We are stronger as a unit and we each have a network of support, which helps in spreading awareness.”
Funding DIPG Projects
This month, the Mosiers and Carrs spoke with the Defeat DIPG Scientific Advisory Council regarding grant applications to be funded in 2018. Once details are finalized, the foundations expect to make a joint announcement in mid-December, detailing the projects to be funded.
After all of the hard work put into building their respective foundations, the process of funding projects that will tangibly move the needle forward for DIPG is incredibly gratifying.
“We are excited to form this partnership with the ChadTough Foundation,” said Mark.
“We are so impressed by the amazing work that Tammi and Jason are doing to bring attention to DIPG. By working together, we can make an even greater impact on advancing DIPG research and ensuring that children diagnosed with DIPG in the future will have access to the effective treatments that Michael, Chad, and all kids who faced DIPG deserved.”
Announcing the projects that will be funded is exciting and important for both families. Jason and Tammi and Mark and Jenny have seen countless supporters offer time and money to their respective causes and this feels like a gift for them.
“All of these people give so much to each of our foundations,” said Tammi.
“It is an amazing feeling to be able to show them what is being done with their donations. Pivotal research is being performed that wouldn’t have been possible without their efforts. ‘Thank you’ just isn’t enough to express how we feel.”