It’s natural to be selfish on behalf of your loved ones. After all, they are what make your life worth living. So when you hear about a “rare” disease affecting just 400 children nationwide, it’s easy to ignore.
But that’s where The ChadTough Foundation comes in. Jason and Tammi Carr have made it their mission to educate the masses on Diffuse Intrinsic Pontine Glioma, or DIPG, which took the life of their youngest son, Chad, on November 23, 2015.
Chad was diagnosed exactly 14 months prior on September 23, 2014 at the age of four. His courageous fight captured the hearts of people across the country as mom, Tammi, shared the story on Facebook.
“What is so devastating about this disease is that it is a death sentence for the children diagnosed,” said Tammi. “What we are trying to do through the foundation is fund the research needed for a cure.”
Enter University of Michigan men’s basketball coach John Beilein. Beilein is participating in the Infiniti Coaches Charity Challenge for the sixth consecutive year. Previously, he had selected the Saint Louis Center in Chelsea, Mich. – a residential community for people with developmental disabilities – as his charity of choice.
But with the recent passing of Chad – a little boy he and his family had come to know and personally support – Beilein decided to select The ChadTough Foundation this year, opening up the possibility of $100,000 going toward DIPG and pediatric brain tumor research.
“The folks from the Saint Louis Center have been amazing,” said Jason Carr. “They could have simply passed the baton without a word, but they have instead offered to help us in any way they can to ensure Coach Beilein and ChadTough win this thing.”
It’s a testament to both Coach John Beilein and Chad Carr, the little boy who stole America’s heart.
Why Invest in DIPG Research?
When Jason and Tammi Carr received the devastating news that Chad had DIPG, they knew nothing about the disease.
“It took me about a week to really be able to remember that diagnosis,” wrote Tammi on her Facebook page, “9–12 months … that’s the piece of information I remember receiving as I lay flat on my face on the floor of the PICU. I remember saying over and over, ‘I can’t do this, I can’t do this …’”
Receiving that news without hope for a cure is what Jason and Tammi are trying to prevent for future families … and there is real hope of that happening.
Just as Leukemia evolved from a death sentence in the 1950s to a better-than 90-percent curable rate today, so can DIPG. Leukemia was previously considered incurable, but the discovery of combination chemotherapy treatments was a game-changer … and not just for Leukemia, but for all cancers.
“They call it a ‘home run strategy,’” explained Jason Carr. “DIPG is such a complex cancer that finding treatment options for it will help a number of other cancers.”
Hope For A Cure
The late Neil Armstrong and his wife, Janet, were affected by DIPG when their three-year-old daughter, Karen, succumbed to the disease in 1962.
How is that relevant to the Carr family?
Jason and Tammi were startled to discover that next to nothing had been done to advance treatment of the disease since Karen died more than 40 years earlier. That was unfathomable to them.
“‘Rare’ isn’t an excuse,” said Tammi Carr. “These kids don’t stand a chance. That has to change, and we are going to make sure that change is Chad’s legacy.”
Until 4–5 years ago, progress was next to impossible due to lack of tissue samples. Now that families affected by DIPG are coming together to work toward a cure, samples have been collected and progress is taking place.
“In the past year and a half alone, researchers have made big discoveries,” said Jason Carr. “What they have found in that short amount of time is already making a huge difference in understanding how to treat it.
“We are hopeful that big change is around the corner. We just need to get the right people the funding they need to continue research and development.”
Infiniti Coaches Charity Challenge
That’s where you come in.
“For a disease that has had no voice at all, $100,000 toward research would be a huge deal,” said Tammi Carr. “Not only is Coach Beilein giving us the opportunity to win, he is giving this disease a national platform to evoke change.”
Whether Beilein takes the grand prize is dependent on your votes over an 10-week span. From January 4 thru March 13, you can vote once per day through ESPN.com. The only caveat is that you must have an ESPN username and password, which is free to sign up.
“We need people in this for the long haul,” said Tammi Carr. “We are a small organization against some big dogs with a lot of power behind them. Winning will take dedication from our incredible support system and beyond.
“We already have people signing up under multiple email addresses and setting daily reminders on their phones to remember to vote.
“We know with this kind of help we can win this.”
To get ready to vote tomorrow at 3pm EST, sign up for an ESPN.com account and then tell your friends that it’s time to get ChadTough!