Yes, You Are Critical in the Fight Against DIPG

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.

Chad Carr
Chad Carr
DIPG share Facebook

Why I Share Tough-to-See DIPG Posts on Facebook

I still remember the moment I started crying and couldn’t stop. It was a November morning. I was perusing Facebook and clicked on a video of little Chad Carr. I had helped at the family’s 5K event the month before and Chad had seemed okay. Watching the video that morning, it was clear that Diffuse Intrinsic Pontine Glioma had taken its toll.

Chad Carr

Christmas came on November 12 for Chad Carr and his family.

His mom, Tammi, was waking him up for Christmas morning. The only thing was, it was early November. But Chad’s family wanted their little boy to have one more Christmas and they knew he wasn’t going to make it to December 25.

I can still remember Tammi’s words, so excited to wake up her little boy, but the part that broke me was Chad’s glee that it was Christmas. The pure joy that remained despite a brain tumor that was robbing him of life. It was that childhood innocence seen in a short video clip that had me sobbing.

I have cried for other children since then. All of these innocent children who have had their lives stolen by a brain tumor with no cure. It is rare, says the medical community. We can’t single out diseases, say politicians.

Those statements may be conceptually true, but they aren’t right once the reality of DIPG is seen because there aren’t many diseases in the developed world absent of hope. Even the worst have a chance of survival. DIPG does not. You are delivered the diagnosis and told you are lucky to have a year to spend with your baby. Then you watch them die.

Put yourself in those shoes and then tell yourself that the rarity of the disease is a legitimate argument to a lack of funding and attention.

That’s what brings me to my purpose in writing this. Katherine the Brave passed away on Monday after a one-year, four-day battle with DIPG. Her family has made it their mission to expose the cruel, vicious reality of the disease. It is what more and more parents are doing as a way to bring attention to DIPG and the need for a viable treatment plan. I say viable because the current “treatment plan” is to send families home to make memories. Those who are “lucky” have what is referred to as a “honeymoon period” — a few months free from symptoms after radiation shrinks the tumor.

I understand the need for awareness. Without awareness and dedication, nothing will change. When I share Facebook posts that show the reality of DIPG, though, I often think about those who will see it. Friends, family, and acquaintances with healthy children and grandchildren who may not want to be exposed to the ugliness of life and death. I get it. You’re talking to someone who refuses to watch animated animal movies because a character always dies.

But it is our responsibility to see it. Just as it is our responsibility to see the war, poverty, abuse, slavery, racism, and sexism running rampant all over the world. We don’t have to take on the burden of all these things — that would ruin us — but we have to see it. Seeing it changes our hearts, minds, and actions, and it can make a difference in the smallest – and biggest – ways.

I do understand, though, that seeing it makes us vulnerable to the reality that we are not separate from it. It could be any one of our children receiving a horrible diagnosis and we know that. Even if our conscious mind doesn’t allow it, our subconscious mind understands, resulting in paralyzing fear.

I believe it’s why we try to “fix it” for grieving parents. We want to believe that if the same thing happened to us we would somehow “get over it” and live a happy life. We want to quiet the terror in our hearts that a random act of horrible luck could result in our worlds being turned upside down and irreversibly damaged.

Unfortunately, there is no fixing a grieving parent. There is no “making it better.” There is only support, love, kindness, and care. Seeing images of Katherine the Brave’s final days in her earthly body and her parents sobbing with grief is heart wrenching. I do want to fix it. I want to help. I want to do something. I suppose it’s why I’m writing.

Even if we found a cure for DIPG directly from Katie’s donated brain, though, it would not “fix” her parents or family. It would not alleviate their pain or take away their grief. It’s the same for all of these families fighting for a cure. They do it to carry on the legacy of their children, to keep busy, to hold on to a purpose, and to ensure other families never experience the anguish they have experienced … but it won’t change their pain.

Each day when I spend time with my three children, I think about the mortality of our family. I think about the possibility that something could happen to any one of us at any time. I would be lying if I said it didn’t scare me. I would be lying if I said I didn’t try to push those thoughts out of my head. But I would also be lying if I said it didn’t make me appreciate life more.

Yes, I still find myself barking orders at my kids and saying things like, “Are you insane? Stop spinning/touching that/falling!” But I also find myself with the ability to laugh a lot more (even if it’s on the inside) at the craziness of children. I appreciate them for who they are and I am thankful every day that I am given the privilege of being their mother because tomorrow isn’t guaranteed.

Then I continue to share those Facebook posts, write stories, and talk about the ugliness of DIPG, because it needs to be shared. These families will help the medical community find a cure, forever revered for the sacrifices they have made and the unwavering love they have shown.

You can support DIPG research and awareness through The ChadTough Foundation’s RunTough for ChadTough event on September 24. Run in Saline, Mich., or anywhere as a virtual runner.

mother's day dipg

There Will Be A Heartbreaking Side of Mother’s Day for These 3 DIPG Moms

mother's day dipg

Tammi and Chad. Photo: The ChadTough Foundation

Mother’s Day is this Sunday. In light of that event, Angelique Chengelis wrote this beautiful piece to spotlight Chad Carr‘s mommy, Tammi. The story digs into what other mothers fear the most.

They were sitting together for a while when Chad told his mother he was tired.

And he pointed up,” Tammi said. “I said, ‘Do you want to go upstairs?’ And he shook his head no. And then he put out his arms for me to pick him up and I just held him. And he fell asleep and he didn’t wake up.

I don’t know if he saw angels, but it was a peaceful look on his face.”

The strength it takes to share something like that is insurmountable. For those who haven’t lost a child, reading it can be uncomfortable. We all want to remain in our bubble that doesn’t include loss – one that remains on the surface and doesn’t familiarize us with the sorrow of grief.

But it is that kind of sharing that brings about change. When those who have walked through such pain invite us into their journeys, they are giving us permission to approach. They are absolving that survivor’s guilt we let stand in the way of offering support.

In a way, they are taking us by the hand and reassuring us that it’s okay to be uncomfortable, okay to stumble over words. It’s extra effort they shouldn’t have to expend, but they do it for their children and they do it for the cause.

Making it Personal

mother's day dipg

Janet and Jack. Photo: Jack’s Angel’s Foundation

I met Janet Demeter through my work with The ChadTough Foundation. I cried as she recounted the moment her son, Jack, couldn’t play on the playground with the other kids because of Diffuse Intrinsic Pontine Glioma, or DIPG.

“Throughout all of it, the most important thing is just that he was here and he was an amazing little boy,” she said.

Even though Jack’s Angels Foundation – by Janet’s own account – isn’t a money-generating powerhouse like some of the other DIPG nonprofits, she does whatever she can to move the needle. I am in constant awe of her drive and determination to make a difference using what resources she does have at her disposal, most notably her time.

I followed her Facebook feed as she trekked 200 miles to raise awareness for HRes586 – Chad and Jack’s DIPG Resolution – which she has fought hard to pass. Then she marched up to the Hill to talk to politicians about funding DIPG research.

Her strength amazes me because she doesn’t care that she hasn’t had the monetary resources she would like to have. Instead of complaining or giving up, she has scratched and clawed for every bit of awareness she has generated.

“(It’s) the old argument that, ‘Well, we need more money for healthcare in general and we don’t like to single out specific diseases,'” she spoke in a video following a meeting with Bernie Sanders.

“I should have said, ‘Well, how’s that working for you?’ You’ve got $2 Billion more for the NIH for everybody. So you’re basically telling me the same thing: that my kid can just die, because he doesn’t matter.

“Until we get specific, people, until we look at the most poignant example of neglect in the medical research system, nothing’s going to change. I’m going to fight for it, damn it.”

Reality of Loss

mother's day dipg

Michael and mom, Jenny. Photo: Michael Mosier Defeat DIPG Foundation

Jenny Mosier was also on the Hill that day, lobbying on behalf of DIPG research. She lost her son, Michael, a week after Mother’s Day last year. Jenny, husband Mark, and sister Lila, have championed for Michael through the Michael Mosier Defeat DIPG Foundation ever since.

It has been a labor of both love and pain.

“Michael had been a healthy, active kid, loved playing basketball, soccer, and especially baseball,” writes Jenny in her article, What Motherhood Means to Me, One Year After Losing My Son, in the Huffington Post.

“He was an avid learner with an unbelievable memory that kept us on our toes. His smile lit up the room. One week after his sixth birthday and his first day of kindergarten, we learned he had DIPG, and our world shattered: inoperable, no effective treatments, no cure.”

It’s a reality that has been swept under the rug within the medical community because it affects so few children – 200–400 per year – in comparison to other diseases. But for those 200–400 families each year, there is legitimately no hope. These precious children are losing full lives to this disease and something has to be done about it.

For Tammi, Janet, Jenny, and countless other DIPG mothers, that “something” comes in the form sharing their grief with the world. It’s painful, unbearable, and ugly, but they see it as a necessity.

“Grief is tiring,” Tammi Carr told Angelique Chengelis. “We have two other kids we have to be moving for.

“But at the same time, we’re trying to keep this going. The (ChadTough Foundation, which raises money for DIPG research) is kind of like a baby. It’s Chad’s legacy. It’s what we have left of him. It’s our baby, too.”

Learn more about these foundations at: The ChadTough Foundation | Michael Mosier Defeat DIPG Foundation | Jack’s Angels Foundation

DIPG awareness

DIPG Awareness is Spreading Thanks to Chad Carr

Over the last five months since Chad Carr’s passing, I have connected with so many families whose lives have been changed forever because of Diffuse Intrinsic Pontine Glioma, or DIPG. Parents who miss their sweet babies and articulate how it doesn’t get any easier with the passing days, months, and years. Parents who literally count the days since they’ve last seen their child. Parents who have been hospitalized for ailments that can only be attributed to a broken heart.

As a mother of three children, I look at my own kids and can’t fathom the pain. I have a tough day dealing with tantrums, illness, and sleepless nights, and think about the parents who would give anything to deal with one more meltdown, one more stuffy nose, one more timeout. The horrible reality of cancer has changed my perspective.

The pain for these families doesn’t dissipate, but they have given it a purpose. They’ve started foundations, raised money for research, and reached out to newly-diagnosed families. Even that, though, isn’t always enough to keep fighting. Sometimes there are days when nothing is enough.

“One year ago…..one of my favorite videos,” wrote Tammi Carr today on Facebook. “Whenever I hear this song I think about Chad and believe he’s saying hello from heaven. Glad my boys are still able to find joy daily. CJ told me the other day that it is sad, but that he chooses to think about the memories and then those make him happy. Wow….The memories make me smile too, but they are also so hard. Can’t help but to think about what this day would be like with Chad still here. I am grateful that he is healed and whole in heaven, but I miss him so very much. Trying hard to find the joy in each day and to treasure every day with my family.”

Looking for A Sign

One month ago, the Carrs were having an especially difficult time, looking for a sign that they were headed in the right direction with their advocacy.

DIPG Awareness

Chad Carr with brothers CJ and Tommy in April of 2015. (Photo: ChadTough Foundation)

“Today marks four months since Chad left us for his forever home,” Tammi wrote on March 23. “This has been a very hard week…harder than it’s been since he’s been gone. I’m not sure if things are becoming a little bit more real, or if things have just been building up….but it’s been tough and I miss Chad like crazy. Praying for strength as we continue to move forward each and every day….”

Tammi and Jason received that sign in the form of a keynote speech by Francis Collins of the National Institutes of Health. Dr. Collins was the keynote speaker at the 3rd Annual Cracking the Cure Gala in honor of Gabriella Miller, who passed away of DIPG in 2013.

Gabriella’s parents, Mark and Ellyn, have been huge in petitioning for DIPG research and funding, resulting in the Gabriella Miller Kids First Pediatric Research Fund which appropriated $12.6 million to the NIH Common Fund to support pediatric research. In his speech, Dr. Collins talked about the advancements in pediatric cancer research and the hope that can be derived.

“We’re making huge strides in areas like Leukemia and lymphomas and melanomas,” he said. “But DIPG has still been a really tough problem for us – that terrible tumor that took Gabriella’s life. We need all the tools and all the talents that medical research can muster … so we can come up with new strategies that will really work. That’s what Kids First … is enabling us to do a little faster than we otherwise could have.”


The Miller family’s hard work and love for Gabriella made this happen.

Dr. Collins made many promising statements regarding pediatric cancer research and funding. There won’t be a cure tomorrow, but the right people are working on it, and it’s because of parents like the Millers, the Carrs, and many other families who are dedicating their lives to funding a cure.

Despite all those promising statements, though, it’s the story Dr. Collins ended with that felt like a personal message from God to Tammi and Jason Carr – it’s something they call a “God wink.”

I’ll let Dr. Collins tell it in his own words.

Dr. Francis Collins Keynote Speech

“My story actually was not one that I encouraged to happen but it happened anyway. By granddaughter, Bailey, who lives in Tecumseh, Michigan, is a big Michigan football fan. Bailey, who is 12 years old — she’s in 7th grade — was at a Michigan football game when she heard that Chad Carr, grandson of Michigan’s coach Lloyd Carr, had been diagnosed with DIPG.

“Bailey was moved to help and she and two of her friends … sat down to watch the Michigan-Ohio State game and they finger knitted in the space of that game 30 scarves and planned to sell them at school to raise money for the ChadTough Foundation to honor Chad Carr. They had their hearts in their mouths when they went to the principal to ask if it was alright to do this, and the principal thought about it and said, ‘Well, yeah, I guess it’s a good cause.’

“They figured, we’ve got 30 scarves, maybe we’ll sell one or two. They sold out in an hour. There were a lot of people saying, ‘Where’s mine?’ so they went back, they knitted more, they knitted more, they knitted 110 scarves – imagine that – three kids. And they sold all of those and ultimately raised $561 for The ChadTough Foundation for DIPG.

“And there was no greater moment of pride or a sense of how incredibly important and significant this is than listening to my 12-year-old granddaughter on a radio interview talking about why she did this. We were fortunate – (wife) Diane and I – that we were able to acquire one of these scarves.

“So in a way I had not in any way near anticipated, meeting Mark and Ellyn (and) becoming so attached to their incredible dream my granddaughter helped me realize just how important this is across this nation for so many kids who need answers. Though Chad sadly did not survive, his foundation – like The Smashing Walnuts Foundation – lives on and I understand the connections now between these two foundations.”

It’s amazing how things happen, isn’t it? Here is this man in this powerful, influential position, speaking on behalf of DIPG because his granddaughter was moved to action by the life of Chad Carr. Mountains may be moved because this 12-year-old girl heard Chad’s story and wanted to do something about it.

You may be thinking, “Sure, but her grandfather is the head of the NIH – her actions carry a greater weight.” Yes, but would she have known about Chad’s story had the community, the media, the friends, the churches, the families spread the word the way they had? It’s all relative and it all makes a difference.

Don’t ever think what you’re doing is insignificant to a greater cause. Don’t ever think you can’t make a difference. Even if you influence just one person, you’ve done something incredible that could change the world.

Watching so many amazing people fight battle after battle to make a real difference in the world of pediatric cancer is something that has inspired me and changed my outlook on both life and humanity. I truly will never look at the world quite the same way ever again.


Why We Keep Fighting for These Brave Little Souls

It’s been less than a week since we celebrated our victory in the Infiniti Coaches Charity Challenge. The project not only awarded The ChadTough Foundation with $100,000 for DIPG research, it spread awareness locally and nationally. The contest is what kick-started a group of advocates dubbed “ChadTough Champions,” which — now that voting has ceased — is chomping at the bit to get to work on the next project.

DIPGIt’s awesome, but I admit it’s been short-lived. While we ride the momentum wave of that small victory for Diffuse Intrinsic Pontine Glioma, the ugly disease keeps right on devastating.


This Clarkston charity basketball game had connections from three local families impacted directly by DIPG.

Just today I received a private message from a friend I went to high school with. When I glanced at the pop-up, I saw the words, “Chrissie, I can’t believe it …” and then saw “DIPG.” One of her students was just diagnosed. She’s eight.

How could this be? This “rare” disease has managed to touch my life in countless ways. It seems everywhere I turn, someone I know is learning that a loved one, neighbor, friend, classmate, or co-worker has been directly impacted by DIPG.

When I wrote about Dan Fife and Clarkston High School honoring The ChadTough Foundation, I was shocked to find out that three different children with DIPG were directly associated with the event. Dan’s sons — Dugan and Jeremy — are each close with a family that has lost a child to the disease, and Amy Quayle, a teacher at Clarkston and a ChadTough Champion, lost a niece to DIPG seven years ago.

How is this possible? It seems DIPG is suddenly everywhere even though it’s “rare.”

The Sad Reality of DIPG

We won the Infiniti Challenge and felt a fleeting moment of victory before it was ripped away by reality. Yes, we are making important progress, but we aren’t there yet.

Tammi and Jason Carr were prepared for a cancer diagnosis when they were at Mott Children’s Hospital in September of 2014. They could tell something was really wrong and got themselves mentally ready to hear the words.

Can hope be derived from all that is happening right now in the DIPG research community? … without a shadow of a doubt that the answer is yes. — from 3 Reasons You Should Fight for DIPG Research

They would fight it. They would deal with the chemotherapy, radiation, and ugliness that came with cancer. It wouldn’t be fun, but they could do it. Then they received the life-altering news that it wasn’t just cancer, it was DIPG. A diagnosis Tammi couldn’t even pronounce for a week after receiving it.

It robbed her family of the hope they had. Even with cancers that carry a dire 25-percent chance of survival, there is still hope. There is still room to carry determination to win a battle. When that chance is zero, that hope is erased. Determination transforms into helplessness.

The Brave Little Souls


Chad is one of many brave little souls.

There is a poem the Carr family included on the back of the program at Chad’s celebration of life service entitled, “The Brave Little Soul.”

It reads:

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world.

He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked.

God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”

The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle for the good of all humanity.”

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!”

God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.” God and the brave soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts.

For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

The most difficult part of this fight against DIPG is that there are so many brave little souls who will be lost in the process. Just as the poem says, there will be plenty of good to come from these children, but we would rather not have to say goodbye.

I have spoken to many families who have lost their children to DIPG. Their children share so many of the same characteristics: they are kind, brave, strong, determined, and wise beyond their years. So many of these children comfort their parents through the hard times. It’s as though every story I hear makes “The Brave Little Soul” more and more real to me.

The Brave, Brave Parents


The word is spreading for DIPG awareness thanks to the families who won’t give up.

DIPG parents are some of the strongest, most courageous and selfless people I have ever had the honor of speaking with. They have allowed their children to participate in trials to contribute toward finding a cure. They donate their child’s tumor for research. They hold fundraising events and awareness rallies. They are driven to honor their children, but all say with such passion that they never want another parent to go through the hell they’ve endured.

Winning the battle against DIPG won’t happen overnight. No one is going to catch lightning in a bottle. It’s going to take perseverance, hard work, and prayer. Research will lead to progress before the big win, like finding treatment options that prolong life. That is the science behind it.

But let me tell you why these parents are fighting for awareness. You might think awareness is nothing more than lip service, but it carries so much weight. So many of these brave parents have been written off in hospitals because they carry the DIPG diagnosis. They aren’t presented with treatment options for common illnesses because they are slapped with the DIPG label.

It’s not okay.

These brave parents are raising awareness to fight that stigma and encourage young doctors and researchers to challenge DIPG all while they are bringing in money to fund the process. We can help by supporting those parents with our time, money, or spreading of the word.

Really, that’s all it takes. Instead of shaking your head or turning from the sadness, embrace the cause and contribute to the cure.

It’s what these brave little souls are still fighting for.


please share for dipg

Please Share in the Name of DIPG Research

When we first started planning for the Infiniti Coaches Charity Challenge in December, we were excited and driven.

please share for dipg

Our sweet Chad Carr.

Honoring Chad by winning this contest was at the forefront of our minds, and as more and more committed to talking about the need for DIPG research dollars, our team only grew stronger.

We were fueled by educating the masses through telling stories of heartbroken families, explaining the science behind the disease, and shining a light on the lack of funding and medical injustices surrounding DIPG.

Our commanding lead in the contest reflected our daily support. With more than 2,000 people voting and spreading the word, we had no doubt we would win this contest for Chad and the other DIPG families.

Now, though, things are different. The political nature of this contest has taken over and it’s no longer about spreading awareness, it’s about getting votes. Instead of excitement and joy over doing the right thing, we are panicking at the thought of not being able to win this contest for Chad.

please share for dipg

A Clarkston charity basketball game has been just one of many initiatives in the name of ChadTough since this contest began.

That’s really what it’s about, after all. This contest started less than two months after he left this earth, and it became a way to officially honor his memory. If we don’t win this contest, all of the effort, hard work, and dedication will be for naught. Or will it?

Jason and Tammi want to get that national spot on ESPN to tell the world what DIPG is and what needs to happen for treatment options to become a reality. They will do whatever it takes to ensure other families aren’t met with the same dead end they were met with when they were told, “DIPG.”

The truth is, though, we can’t control the outcome of this contest. Perhaps micromanaging the voting is the way to go, but maybe it’s not. All I know is that I felt pure joy when we were spreading the word and raising awareness for DIPG. As sad as these stories are, they are uplifting and amazing and inspiring. Introducing the world to these incredible children and their families is making a difference and we aren’t going to stop just because this contest ends.

Vote Coach Beilein for ChadTough!VOTE: espn.com/infiniti

We are so thankful for Coach Beilein and Kathleen’s unwavering support for ChadTough! Choosing ChadTough for this year’s Infiniti Coaches Charity Challenge has raised the volume of DIPG’s voice. Go Blue and vote Coach Beilein and ChadTough every day!

Posted by The ChadTough Foundation on Saturday, February 6, 2016


Do we want to win this for Chad? Desperately. We desperately want all of the hard work we have put into promoting this contest to come to fruition in a win. We want Coach Beilein and Kathleen to have a tangible win for all of the sacrifices they have made with their time and effort for the cause. We want the 2,000-plus volunteers to be able to holler and whoop over a win for ChadTough. We want the Michigan State and Ohio State faithful who crossed enemy lines for us to have an award they can hold up high.

But it might not happen.

We have to come to terms with the fact that it may not happen. And you know what? That’s okay. It’s okay if we don’t win the Infiniti Coaches Charity Challenge because we will continue to do all the same things we were doing before. We will continue to fight for DIPG research dollars and awareness.

It’s important to me that we don’t lose sight of what this contest is about: wonderful NCAA men’s basketball coaches selecting charities to represent. Charities doing great things that should be recognized.

Thad Matta – Ronald McDonald House

Ohio State’s Thad Matta is representing the Ronald McDonald House, an organization near and dear to the Carrs. They stayed at the Ronald McDonald House in New York when Chad was going through treatment and have nothing but wonderful things to say about their experience.

These facilities allow families to make a home away from home while their children are being treated in the hospital — something invaluable during very stressful times.

Matt Painter — Smith Family BReaK Thru Fund

Purdue’s Matt Painter is representing the Smith Family BReaK Thru Fund, which supports the Smith family’s efforts toward raising research dollars in the name of their three children: Braden, Riley, and Keaton.

All three children were diagnosed with Riemann-Pick Type C disease (NPC), a neurodegenerative disorder which causes progressive deterioration of the nervous system. Sadly, Braden lost his fight with NPC in 2006 at age 10, while Riley and Keaton continue to fight.

The Smith Family BReaK Thru Fund is dedicated to funding research projects for NPC the way the Carrs are dedicated to funding research projects for DIPG.

Brad Underwood – Nacogdoches Area United Way

Stephen F. Austin’s Brad Underwood is representing the Nacogdoches Area United Way, which serves its community in the areas of education, health and financial stability. Just as the many Ronald McDonald House locations around the country are fantastic in what they do, so are the many United Way locations.

Coach Underwood is not only representing the NAUW in this contest, he offers his time and has been named the 2015 Tim Hayward Volunteer of the Year.

John Beilein – The ChadTough Foundation

please share for dipg

Photo: USA Today Sports Images

Last, but certainly not least, Coach Beilein has done an incredible job representing The ChadTough Foundation, a charity dedicated to raising research dollars and awareness for DIPG. This disease is one that desperately needs a voice.

Parents are delivered the diagnosis and, unfortunately, left flailing. They are tasked with the responsibility of guiding their child’s treatment in a sea of few options. More often than not, the only hope these parents can cling to is one that comes with an experimental clinical trial that puts their child through too many pokes and uncomfortable procedures.

Treatment for DIPG hasn’t changed in more than 40 years and it point-blank isn’t fair. These otherwise perfectly-healthy children are dying because we have no concrete answers.

Thankfully, family foundations throughout the country are helping answers materialize. Research dollars are being raised, tumors are being donated, and progress is happening. The tipping point has been awareness. The more people learn about this horrible disease, the more progress is made.

Please consider sharing this story in the name of DIPG and voting for Coach Beilein. Yes, we are hoping to win this contest for Chad, but even if you simply share this story and make someone aware of DIPG who wasn’t before, we have honored our sweet little boy and all of the other incredible children who fly high with him.

Avery Huffman DIPG

What it Really Means to be Fueled by Faith

It’s been awhile since I’ve written about my journey with The ChadTough Foundation, but today is the day. Today is the day because yesterday sweet Avery Huffman — a little girl in Seattle who was diagnosed with DIPG 7.5 months ago — gained her angel wings.

Though a number of children that have lost their battles with Diffuse Intrinsic Pontine Glioma over the last two-and-a-half weeks, Avery’s story is special to me because I spoke with her parents in early January for a story I wrote. It adds a personal element for me and it’s heartbreaking to read what they are going through.

I feel as though I’m shielded from the brutal pain that is losing a child to DIPG (or losing a child, period) because I work with Jason and Tammi Carr. The two of them have such incredible strength to push forward and continue to represent Chad the way they do that sometimes I forget to be in awe.

But then I read the words of Amanda Huffman, Avery’s mom, about losing her sweet girl yesterday and the reality of what all of these DIPG families go through hits me hard.

Amanda shared a blog post from the website, Unravel Pediatric Cancer that reads, “It doesn’t seem real at all. It feels like she is just sleeping … or hanging out at my parents house. I was so constantly busy taking care of her since Oct28th I keep feeling like I am forgetting to do something. I’m not. She doesn’t need me anymore … quite the opposite. I so desperately need her.”

Reading the raw, real account of what it feels like to lose a child brought me to tears — something that hasn’t happened in awhile.

Obviously I have never met Avery, but, through her dad, Brandon, I received a picture of her personality that made a lasting impression on me. When I asked Brandon to describe Avery, he talked about her stubborn streak and her will to do what she wanted, regardless of the rules.

He then gave me a “for instance” that says as much about the Huffman family and their sense of humor as it does about Avery.

If a group of children were climbing on the monkey bars, he said, Avery would want to climb, too … even if her version of climbing meant sitting in her wheelchair with a single hand on one of the bars.

The visual made me laugh so many times over. I feel like I know Avery, her parents, and her siblings — Alex, Cade, and Addison — even though I’ve never met them.

Avery Huffman

The whole family: Brandon, Amanda, Alex, Cade, Avery, and Addison.

I’m honestly not sure what I’m supposed to say in this post. Amanda’s words rocked me to my core, envisioning a world in which I would see my baby’s things around the house, knowing my baby was never coming back. The pain this family — and so many other families — is experiencing is excruciating.

Yet these families are so strong in their faith. They know their daughter is up in heaven, able to run and jump and play again. It’s something that amazes me, the strength these families draw from their faith. It is something that has brought me back to the church with a renewed sense of what it means to believe in something greater than myself.

Avery Huffman DIPG

Together at Husky Stadium.

It’s a point I think so many of us miss. We miss the point of what it means to be a believer in God, which is understanding that there is life beyond our current residence. I don’t think the nuances matter. The point is to draw love from faith. If you are drawing love from faith, then it is the right faith.

A loved one’s death can completely change how you see the world, because you realize there is no way they could just cease to exist. Their souls don’t just fizzle out. They remain by your side. They give you signs, they send you messages, they continue to love you.

I write these words at the risk of alienating those who will think I’m off my rocker, but the truth as I see it is that the precious children who have succumbed to DIPG have done so with the mission of saving those who come after them. Of uniting good-hearted souls here on earth in the name of love to find a cure and raise awareness.

I have never seen such selflessness as I’ve seen since Chad Carr has passed away. I have never seen such strength as I’ve seen in the parents of these precious children.

For all of the ugliness and devastation in this world, there is belief that these children are waiting for us on the other side. It leads me to one of my favorite passages in the Bible, which Brandon Huffman actually cited yesterday:

Revelation 21:3–5: “And I heard a loud voice from the throne saying, ‘Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.’

“He who was seated on the throne said, ‘I am making everything new!’ Then he said, ‘Write this down, for these words are trustworthy and true.’”

Rest in peace, sweet Avery. I hope you’re enjoying those monkey bars with Chad and all of the other DIPG angels in heaven.

Follow the Huffman’s journey at CaringBridge.

Brandon Inge and Chad Carr

Know that You are a Part of Chad Carr’s Story

Prior to Chad Carr’s diagnosis, I had never even heard of Diffuse Intrinsic Pontine Glioma, or DIPG. In fact, every DIPG parent I’ve spoken to said they had never heard of it either.

That, my friends, is the problem.

Not because we should make a point of looking up rare diseases so we are never caught off guard, but because we need to pay attention when we are finally told about one.

“The system” has let down children with DIPG. This disease has been killing for decades and nothing has been done about it because no one has had the voice to force the public to pay attention.

Enter Lauren Hill and Chad Carr.

A True Hero

Lauren Hill DIPG

Photo: Andy Lyons/Getty Images courtesy of USA Today

Lauren Hill captured the hearts of sports fans everywhere when she opened up about her DIPG diagnosis in 2014. She was diagnosed as a senior in high school, just 48 days after committing to play basketball at Division III Mount St. Joseph University. To say Lauren Hill was a hero would be a gross understatement.

“I know that this is a disease that mostly affects little kids,” she told Jim Rome in October of 2014. “I’m old enough to express my symptoms and talk to the doctors clearly about what’s happening to me and what’s going through my mind. Kids don’t have the words or the ability to articulate what’s happening to them. So I need to be the voice for little ones.”

Hill’s determination to raise money (she raised more than $1.5 million) and awareness for DIPG made a lasting impact on the country’s understanding of the disease. Still, it hasn’t been enough. While many remember Hill’s impact, they may not remember that it was DIPG that took her life.

“Lauren Hill spent her final year polishing a layup and inspiring others to live fully,” read the lede of an ESPN article published the day she died. “She succeeded at both as she fought an inoperable brain tumor.”

An inoperable brain tumor. Not Diffuse Intrinsic Pontine Glioma. The tumor was never named in the article.

That is a problem.

Ann Arbor’s Sweet Boy

As Hill made national news with her story that Mount St. Joseph would move up it’s opening game so she could play, the Carr family was reeling from the news that young Chad was diagnosed with DIPG on September 23, 2014, just three days shy of his fourth birthday.

“This is Chad,” wrote Tammi on her Facebook page. “My precocious, beautiful smart soon to be 4 year old. Yesterday our lives changed as he was diagnosed with an inoperative brain tumor in his brain stem. We now need prayers and its my hope that this goes viral and millions fall in love with my little man and send him prayers. It’s going to take a miracle and I believe it can happen and I hope you will help and spread his story!!”

The story went viral within days. The Ann Arbor and Saline communities rallied around the family, and Tammi continued to share Chad’s story through Facebook.

“To post something on Facebook and have it take off the way it has (means) there’s a plan here. I put one post up,” Tammi told MLive two months later.

“It’s weird. One week we’re living our lives and the next week it’s you getting this support from just amazing places. People like Charles Woodson and others who have been friends over the years, that’s their way of showing support.

“But the outpouring from Texas A&M, Georgia Tech, getting things in the mail, the Sabres, the Maple Leafs, it’s awesome. It’s really awesome.”

Now You Are Part of the Story

Chad Carr DIPG

Chad Henne and Denard Robinson show their #ChadTough support within days after his diagnosis.

Lauren Hill and Chad Carr have become the faces of DIPG, but there are so many other precious children and families who have been affected. I have been tasked with the very important job of giving those children a voice through the conduit of The ChadTough Foundation.

You have a job, too. It is your job to give this disease a louder voice by spreading the word that it exists and that it needs a cure.

“I remember thinking to myself, OK, what are they going to do?” Hill told The Jim Rome Show in 2014. “I expected them to have some kind of plan and that’s what I was waiting to hear because I just wanted to get back on the court. I wanted to keep playing that year. I didn’t want to stop.”

There was no plan.

It’s the feeling so many parents experience when they are told their child has DIPG.

Okay, what do we do now?

There isn’t anything to do. There aren’t any answers. It’s an end-of-the-road diagnosis and it has to change.

“If you look at other cancers as an example, you’ll see that the cancer dollars that flow (go) where people demand they go,” said Dr. Michelle Monje, a clinical researcher at Stanford who has devoted her career to DIPG. “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 (DIPG) research, they’re more willing to donate (and) to demand from their government representatives that funds be spent to understand this important pediatric cancer.”

Less than three months after Chad Carr gained his angel wings, The ChadTough Foundation has raised approximately $1 million that will go toward DIPG and pediatric brain tumor research.

Your voice is working. Now make sure you keep talking.

compassion toward DIPG

4 Things You Need to Know When You’re Talking to a DIPG Family

Over the past month, I have spoken to seven families who have dealt with the horror of Diffuse Intrinsic Pontine Glioma, or DIPG. As painful as it is to hear about their loss and heartbreak, it has also been wonderful to hear about their children. These parents have such admiration, love, and fondness both for the children they have lost and the siblings that survive.

My heart goes out to all of them.

What I didn’t expect when I started this journey was the judgement and isolation these families would tell me they experienced upon learning their child had DIPG. It didn’t (and still doesn’t) make sense to me.

How is it that families stricken by this nightmare are ostracized and judged by their own relatives and communities?

While I couldn’t possibly address all of the nuances at the root of this problem, there are a handful of common issues I believe contribute.

It’s Not About Attention, it’s About Awareness

I had a conversation with someone who shared with me that he was bothered by the level of attention some children with terminal cancer receive.

“A lot of children have cancer,” he had said. “Why is so much attention given to a few?”

The comment felt like a slap in the face. First of all, what does it matter if one or two children receive the majority of the attention? I can’t speak for all kids with cancer, but when it comes to kids with DIPG, it’s an all-for-one and one-for-all mentality.

Attention given to one child with DIPG is much-needed awareness given to the disease as a whole. Aside from a select few (saintly) people, the government hasn’t paid attention to the disease, the medical community hasn’t paid attention to the disease, and the research community hasn’t paid attention to the disease.

So when one or two children capture an audience, you’ll be damn sure jealousy isn’t even on the radar of others within the DIPG community. What actually happens is rejoicing because awareness is finally being spread.


The entire point of giving special attention to these kids is that they are going through hell. Hell. Many of these children are diagnosed once they start to show symptoms and can’t walk within a week. That’s how fast this disease takes over.

One parent whose daughter is still fighting this demon shared last night that someone said, “I bet you guys have gotten to do a lot of fun things as a result of (DIPG).”

The comment floored me.

Their daughter — a healthy, vivacious, strong-willed girl with her life ahead of her — was diagnosed six months ago. She has since had two brain surgeries, can’t walk, has double vision, can’t use one side of her body, and lives each day with her family not knowing if it will be her last. Fairly certain the last word that should be used to describe that ordeal is “fun.”

Trips to Disney, visits from professional athletes, time spent in a suite at a sporting event, toys, games, and money, are all attempts to squeeze a precious smile out of this little girl who has dealt with more over the past six months than the majority of us will ever have to deal with in our lifetime.

Think before you speak.

It’s Not Always Comfortable

Once you learn of a child who has been diagnosed with DIPG, it’s uncomfortable. You don’t know what to say, how to say it, when to say it, whether you should say anything at all. I get it. I really do. The last thing you want to do is make an idiot of yourself right?

Well, I’m here to give you permission to make an idiot out of yourself in the name of love, kindness, and compassion. If you put your foot in your mouth, so be it. At least the recipient of your attempt will know you care.

All of the families I have spoken to reported that they immediately felt alone and isolated upon receiving the DIPG diagnosis. They had no idea who to turn to and felt like the world was moving on without them and their precious baby. It is so sad that they are made to feel that way in a moment when they need people most.

Yes, there are some who don’t want to talk to anyone and need time to digest the devastating news they’ve just been handed. That’s understandable, too, but it doesn’t mean you can’t make an effort.

Suggestions of what to say:

  • “What can I do for you?”
  • “What do you need?”
  • “How can I help?”
  • “I’m here when you need me – I’ll check in next week.”

Don’t second guess reaching out. You may feel guilty because you have your own healthy children, but you shouldn’t. Don’t let something like that stand in the way of being a shoulder for someone to cry on.

It’s Not Something You Get Over

One mom told me that, upon posting weekly memories about her daughter who had passed away, someone expressed discomfort and suggested that “enough time had passed” that she should start moving on. Another mom told me that someone in her family had mentioned she should “be over” her son’s death and “get a real job” after six months had passed.

Yet another shared that she knew of many members of the DIPG community who suffered the loss of their child and were subsequently forgotten by the medical community, so to speak. No more check-ins, no more care, no more wondering how they are doing. It’s like their child never existed.

Why am I telling you this? Because the death of a child isn’t something anyone “gets over.” Have I experienced the death of a child? No. But I recognize that getting over a child isn’t something you fix. You don’t go to a counselor so you can move on from that kind of loss, you go so you can cope. It’s something that becomes a part of you.

I have one friend who lost her 16-month-old daughter almost 30 years ago. The ache of that loss has never gone away. I often look at my own baby girl – now 13 months – and think about how it would feel to suddenly lose her without warning. The pain and agony that would accompany that is overwhelming.

There would be no “getting over” it. No one gets over it. Don’t try to tell someone they should get over it. Instead, share your memories of their child, ask them for theirs, tell them you’re thinking about them. Don’t try to fix them with exactly the right comment or expect them to spew sunshine and rainbows for your benefit.

Their heart hurts and it will always hurt. Be understanding and compassionate instead of judgmental and isolating and our world will be a much better place.

Chad Carr - DIPG

3 Reasons You Should Fight to Make A Difference with DIPG Research

Chad Carr and Mark Souweidane DIPG

Chad Carr with Dr. Mark Souweidane in New York.

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?

Dr. Michelle Monje - DIPG Research

Michelle Monje, MD, PhD, recently received an NIH grant for work with pediatric gliomas.

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?

Dr. Mark Souweidane - DIPG

Dr. Mark Souweidane is completing his three-year trial that has the potential to make big changes in the effectiveness of DIPG treatment.

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.”

Next Steps

vote ChadTough

Vote each day for Coach Beilein and ChadTough at espn.com/infiniti.

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.