If you are anything like I was before I became involved with The ChadTough Foundation, you give to charity wondering whether your money will actually make a difference. Are you funding an administrative task or real research? If your donation is going toward research, is it making any progress?
Through my work with The ChadTough Foundation, I have had the privilege of meeting and speaking with esteemed researchers and physicians in the area of pediatric cancer. My eyes have been opened to the “man behind the curtain” and I am beginning to understand the nuances of research, funding, clinical trials, and grants.
I have walked away with the knowledge that small foundations like ChadTough matter so much when it comes to diseases considered rare in the medical community. That means the dollars you give to those foundations carry a lot of weight and have a true purpose in prolonging life in Diffuse Intrinsic Pontine Glioma (DIPG) patients and, ultimately, finding a cure.
Working the System
There are two significant realities of DIPG. The first is that it is inhumane the way these children suffer. Their lives are snuffed out within a year. They lose the ability to eat, breathe, and talk. They lose their dignity. They lose all hope.
The second reality is that DIPG affects a small number of children in the grand scheme of things. Let me clarify that one child suffering in this way is too many. But, as defined by the medical community, DIPG is rare.
DIPG family foundations and advocates are dealing with these realities in two ways:
- Awareness. Rare diseases aren’t well known. Even in Ann Arbor where the Carrs reside, I’d guess the majority of people you pass on the street wouldn’t know what DIPG is.
- Funding. Rare diseases aren’t largely funded. The money goes toward the squeaky wheel. In other words, money flows toward outrage and demand. Hence the focus on awareness.
Packing A Big Punch
Okay, you may be thinking, that sounds great. But how far can my $100 really go? What does it matter if I’m ‘aware’ of DIPG? How does that contribute toward a cure?
That’s the awesome part. Both of those things — you being aware of DIPG and you funding DIPG — truly, really, completely matter.
You Fund Proof of Concept
I spoke to Dr. Maria G. Castro and Dr. Pedro R. Lowenstein, researchers at the University of Michigan, who have included DIPG for the past two years as part of their genetic engineering studies to cure brain tumors. Dr. Castro and Dr. Lowenstein are not only conducting studies to help DIPG, they have Chad Carr’s tumor to work with as part of their research.
Dr. Castro’s and Dr. Lowenstein’s ability to perform clinical trials has come from research funded by ChadTough and other family foundations. See, before researchers can fund studies to advance DIPG treatment, they must have proof that they are onto something. It’s like proof of concept in business.
That’s why small foundations are so critical in advancing treatment in rare diseases such as DIPG. Money from these foundations goes directly to researchers who can then show proof of concept.
You Fund Rare Initiatives
When you donate to The ChadTough Foundation, you aren’t just funding DIPG research, you are donating to two incredible champions for the cause. Jason and Tammi Carr inspire us to donate, but they also inspire doctors and researchers to action.
Today I met with Dr. Rajen Mody, who analyzes the genetic make-up of tumors to determine a proper method of treatment for patients. Because DIPG isn’t typically biopsied due to the risks involved, Chad didn’t undergo this analysis.
Once he passed away, however, Jason and Tammi donated his brain for research and asked that Dr. Mody conduct this sequencing on his tissue. This will allow them to better understand the tumor and how to treat it in future patients.
This test is only being done because Jason and Tammi are held in such high regard at the University of Michigan and because ChadTough paid for it.
The Tip of the Iceberg
I will have plenty more to write following the two hours I spent with these three incredible people, but – for today – I simply want to convey that your time, awareness, and donations matter. DIPG is a rare disease, but that doesn’t mean an automatic loss … it just means we have to change the way we play the game.
Small family foundations are the lifeblood of research and awareness. Small family foundations are funded by you. That means you are the lifeblood of DIPG research and awareness. Don’t take that assignment lightly.
The best part? Getting involved doesn’t have to be sad, expensive, or difficult. The ChadTough Foundation is holding it’s 3rd Annual RunTough for ChadTough event on Saturday, September 24. You can run or walk in person in Saline, Mich., or do so anywhere in the country as a virtual runner.
Now that you’ve read this, you can know the small act of running on a Saturday morning will make a huge difference in the overall direction of DIPG research, treatment, and, ultimately, a cure.