This week, I took my DIPG research to another level: I spoke with Dr. Mark Souweidane, a neurosurgeon in New York, and a Dr. Michelle Monje, a neuro-oncologist at Stanford. Both are working diligently to find a cure for DIPG and both contributed to the treatment of Chad Carr during his 14-month fight with the disease.
I will write in-depth profiles on these incredible people down the road, but today I would rather list my overarching takeaways after peppering them with my novice questions.
I was intrigued with the chance to look behind the curtain, so to speak, because we (the public) don’t really understand where research dollars go when we donate to one cause or another. I can feel good fulfilling my duty to “give to a worthy cause” when I write a check for charity, but does it actually make a difference? My guess is that the majority of people solicited to donate wonder the same thing.
When it comes to DIPG, that wonder has to be magnified. Those who give to DIPG research could easily believe their efforts are futile considering the cure rate for the disease is zero. That poses the question: is it worth giving money to DIPG research, or is your dollar better spent elsewhere?
Should You Give to DIPG Research?
Yes, yes, yes, and yes. I can’t emphasize it enough.
If there is one thing I learned having spoken to Dr. Monje and Dr. Souweidane, it’s that we can make a difference through donations. Dr. Monje recently learned she will receive a grant from the National Institutes of Health for pediatric gliomas, a huge reason to be excited considering just 4-percent of NIH funds go toward all pediatric cancers.
“I couldn’t have gotten that funding had I not had the four years of almost exclusive support from private foundations,” she said. “(Those donations) allowed us to get the publications and the preliminary data that were necessary to get over the hump of getting government funding. Looking at the field in general, the vast majority of the research being done is being funded by private foundations.”
This is even more true when it comes to Dr. Souweidane, who dedicated his career to DIPG more than 15 years ago. Dr. Souweidane has developed a surgery — one Chad Carr participated in last January and March — that injects medication directly into the tumor via catheter, something that circumvents a number of difficulties that come along with treating DIPG. He is the only doctor in the United States that performs this surgery.
He is just now completing the very first trial, which began in 2012.
“Every dollar I spend is through gifts and foundations, none of it is federal funding,” he said. “I’ve probably spent close to $3 million total in my 15 years of doing this.”
All from gifts and foundations. Yes, you can make a difference.
Is DIPG Research Making Any Headway?
This is the thing I was most curious about: can hope be derived from all that is happening right now in the DIPG research community? Having asked this question to both of them, I can say without a shadow of a doubt that the answer is yes.
Tissue samples haven’t been available to researchers for decades since DIPG is inoperable. Over the past five years, however, families like the Carrs have donated their tumors to the cause. This is important because it allows them to look under the microscope and see how this disease takes over the brain.
Once Dr. Monje and other researchers were able to analyze the tumor cells, they recognized that all that had been done to treat DIPG to that point had been totally misguided.
“It’s very clear now given what we’ve come to understand the last few years why nothing we’ve tried before has worked,” she said. “It’s a very different disease than other glioblastomas and high-grade gliomas, the standard of which is how we’ve been treating DIPG. That’s been completely the wrong approach.”
It would be like trying to remove a wart with acne medication. Both are bumps, but they aren’t even remotely similar. It’s as though the DIPG community finally has the right destination, they just have to draw the map.
Does Raising Awareness Make A Difference?
This may have been the most empowering thing to learn upon speaking to Dr. Monje and Dr. Souweidane. Awareness matters.
“If you look at other cancers as an example, you’ll see that the cancer dollars flow where people demand they go,” said Dr. Monje. “People have demanded breast cancer research, and there’s been an enormous amount of breast cancer research funded by the government as a result.
“I think that as people are more aware of the importance of the research, they’re, No. 1, more willing to donate to DIPG research and, No. 2, more willing to demand from their government representatives that funds be spent to understand this important pediatric cancer.”
Another factor of awareness is that future scientists and physicians will choose to take DIPG on as a field of study. Passionate individuals like Dr. Monje and Dr. Souweidane are critical to finding a cure.
“(Awareness has) turned this around 180-degrees,” said Dr. Souweidane. “It’s now the one disease of the brain and children that people are extremely, extremely enthusiastic about.
“There’s been a ground swell from patient advocacy groups – that’s driven a lot of this. The tide has shifted, there’s no question about it.”
While a cure won’t be found tomorrow for DIPG, researchers are headed in the right direction for the first time ever, and all of that has been possible because of people like you. People who have given money, time, and care to the cause.
The ChadTough Foundation is dedicated 100-percent to funding DIPG research, so a donation there or a vote for Coach Beilein in the Infiniti Coaches Charity Challenge will contribute to finding a cure.
Yes, you can make a difference. Now go ahead and do it.