If you are not the member of a family directly impacted by childhood cancer, you may be wondering what to do for September’s Childhood Cancer Awareness Month.
You may or may not have already changed your Facebook profile picture (if you haven’t, you can change it here) or donated to The ChadTough Foundation, but it is important that you understand the power you yield as a DIPG advocate.
Jason and Tammi Carr not only use your emotional support as fuel to get through each day, they leverage it to make real change in pediatric brain tumor research.
Causing A Ripple
Dr. Rajen Mody, an oncologist at the University of Michigan, is an expert in precision oncology, or tailoring treatment to each individual patient based on genetics. Through genetic sequencing, he and his team can determine whether a viable drug exists for treatment.
“When you do this genomic sequencing in patients who have no options, in 46-percent of those patients we’ve been able to identify a signature to determine a lead for treatment,” he said.
This procedure is only performed on living patients to determine a method of treatment, but Dr. Mody agreed to test Chad’s tumor, which was donated by the Carr family after he passed away in November 2015.
“This is a special foundation request, otherwise we would not do it,” said Dr. Mody.
It actually would have been illegal for Dr. Mody to perform this test using grant money because it is specifically allocated to patients seeking treatment.
But the rarity of the tumor, the Carr family’s connection to the University, and the fact that ChadTough funded the project in full at approximately $20,000, allowed everything to go through.
“Tammi just has been such a big champion for this cause (and) Chad is such a magnetic presence,” said Dr. Mody, “We have the technology, a family who has invested and created this resource and, in DIPG, anything you can learn is incremental and better.”
The Pieces of the Puzzle
DIPG is rare in the medical community, which means it is funded on a case-by-case basis. Researchers and physicians must show they are onto something viable before they can submit a grant for approval.
Getting to that step is a burden placed on grassroots foundations such as ChadTough. It’s not fair, but it’s something that has been embraced by families driven to spark change. Each foundation champions its own cause, raising money and awareness for research and family-to-family support.
“These foundations have a very, very important role to play,” said Dr. Maria Castro, a researcher at the University of Michigan. “Without ChadTough money, I could have never done (my research) because it had never been done before.
“(We only receive) money if we can prove an idea’s worth and to prove it’s worth we have to have some data.”
RunTough for ChadTough
Big things are coming from The ChadTough Foundation as preparation continues for the 3rd Annual RunTough for ChadTough event. Jason and Tammi have a goal of 2,000 participants and $50,000 raised.
“We are so excited to see that fundraising needle continue to rise as we get closer to September 24!”
Make participating in the RunTough for ChadTough event your contribution for Childhood Cancer Awareness Month. You can run in Saline or off-site by registering as a virtual runner!
Once you sign up, start fundraising so you can contribute to the mountains being moved in Chad’s name and so you can win some awesome prizes, too!
Visit chadtough.org/run for details!