Three years ago today, I sat on my couch and wrote an article as a way to cope with my feelings.
Chad Carr had passed away earlier that day after a 14-month battle with Diffuse Intrinsic Pontine Glioma (DIPG), and it delivered an unexpected punch to the gut.
I went to sleep, not knowing Tammi Carr would share my article. When I woke up, it had tens of thousands of views.
Looking back, I believe that was a Chadwink. A little nudge to get me involved with ChadTough.
A Life-Changing Experience
When I began working with The ChadTough Foundation, I was a volunteer, promoting the Infiniti Coaches Charity Challenge. As a way to encourage supporters to vote, I had the idea to speak to other DIPG families and write their stories.
It was a life-changing experience.
I heard stories of devastation, pain, loss, and faith. Each story taught me about the horrific reality that is DIPG. It let me into the world of what it would be like to hear that my child had 9-12 months to live.
Coach John Beilein went on to win the Infiniti Challenge and $100,000 for ChadTough. He won the year after that, too. Each time, it was amazing to win for DIPG. Awareness was raised. People were inspired.
But each time, it wasn’t enough, and it still isn’t.
Because kids today have DIPG. And kids today are dying.
The Power of Family Foundations
I transitioned from volunteer to staff in January 2017, and have been fortunate enough to attend DIPG symposiums and conferences, interviewing physicians and researchers.
What I’ve learned is that family foundations have been – and will continue to be – critical in progressing DIPG research.
- Donations to family foundations provide money for grants, allowing researchers to study DIPG. Data from those studies results in clinical trials and government funding.
- Clinical trials produce data, providing doctors and researchers with a better understanding of how they can attack DIPG and other pediatric brain tumors.
- Family foundations raise awareness and funds, both of which catch the attention of talented researchers. Historically, researchers have not wanted to study DIPG, because of little to no government funding.
- Money flows to the loudest problems. As more people are aware of and impacted by DIPG, more attention and more money will be dedicated to finding a solution.
Please know this: without family foundations, DIPG research would not be progressing the way it has been for the past 3-5 years.
Why You Should Give to ChadTough this Giving Tuesday
One of the first facts Jason Carr relayed to me after I began working with ChadTough is that Neil Armstrong’s daughter, Muffy (short for her nickname, Muffin), died of DIPG in 1962.
When Chad was diagnosed in 2014, little progress had been made in the treatment of DIPG. That’s more than 50 years’ time.
A movie was recently released about Neil Armstrong’s life, and Muffy’s death was woven through the storyline. Unfortunately, parents today are experiencing the same heartache the Armstrong family felt 56 years ago.
I understand that supporting DIPG is tough. That paying witness to child loss and family grief over and over is difficult. I get that it’s natural to want to hide the social media posts, unsubscribe from the email list, or stop attending events.
But please don’t.
Please give. Please share. Please pay witness. Let experiencing the heartbreak be your sacrifice for these children and their families.
Our goal this Giving Tuesday is to fund one year of DIPG research through the Defeat DIPG ChadTough Grant program. With a $25,000 match from the Alvin L. Glick Foundation, we need $50,000 in donations to meet our $75,000 goal.
Please consider giving. Every single dollar and every single share on social media helps this cause.
Visit chadtough.org/givingtuesday to make a donation.