Chase Winovich

The Athlete Effect: How Chase Winovich Raised $200,000 for Charity

As a college or professional athlete, you deal with a lot. Fans can quickly forget that you are a real person and not a caricature to be scrutinized.

Then, just as quickly as fans cast you aside for a poor performance, they embrace you for a job well done – on or off the field. As frustrating as that is, it’s a phenomenon can be leveraged for so much good.

University of Michigan defensive end Chase Winovich took full advantage of that this past month, recognizing that he could use his platform to help a charity. He wanted to make a difference and thought through what set him apart from others.

“The one thing I really had that a lot of people don’t have is the long hair,” he said. “It’s very noticeable (and) it’s very divisive. It’s a hot topic. I figured there would be some really cool things we could do to help kids in need.”

After careful consideration — Winovich chose The ChadTough Foundation as his beneficiary, a nonprofit with Michigan roots. Chad Carr, the grandson of former University of Michigan football head coach Lloyd Carr, passed away in November 2015 after a 14-month battle with Diffuse Intrinsic Pontine Glioma (DIPG). The ChadTough Foundation raises research dollars and awareness for pediatric brain tumors with an emphasis on DIPG, a disease with a 0-percent survival rate that desperately needs attention.

The ChadTough Foundation is a cause near and dear to my heart and I am proud to serve as the foundation’s Director of Communications. Please visit chadtough.org to learn more about Chad’s story and DIPG.

Winovich started a fundraiser on Crowdrise, stating that he would dye his hair orange for the Outback Bowl if $15,000 was raised for ChadTough. That happened in 13 hours. Soon, other players and coaches joined in the effort, setting lofty goals like $38,500, $73,000, $100,000, and $125,000.

The initiative ended up raising more than $200,000 for the Pediatric Brain Tumor Research Initiative at Michigan Medicine, where Jason and Tammi Carr chose to have the funds directed. That total will also be matched by University of Michigan Regent Ron Weiser.

So, in all, more than $400,000 was raised for pediatric brain tumor research and these players had orange hair for the Outback Bowl, which resulted in national TV coverage for the cause.

This is something every athlete with a platform should take advantage of. It’s impactful, selfless, and fun.

Here is what Winovich did right:

1. He Did Something Newsworthy

Raising money for a charity is great – plenty of people do it – but Winovich thought through what would make him different and, therefore, generate news coverage. He saw the potential in doing something with his hair and embraced it.

If he had simply posted a fundraiser to raise $15,000 for ChadTough, would it have worked? Perhaps, but it wouldn’t have had the same newsworthy element as dying his hair orange.

2. He Rallied Others

Players that joined the initiative said (during the hair dying, actually) that they never thought the money raised would reach the levels it did. Boy, were they surprised.

It is a fantastic example of how excited fans get when they see athletes doing something selfless.

It’s like the quarterback in football: he is criticized too much when the team loses and praised too much when the team wins. It’s not “fair,” but it’s a phenomenon more athletes — especially the high profile ones — can take advantage of.

3. He Was Genuinely Excited and Involved

Winovich’s excitement for this fundraiser was infectious. He wanted to help and it showed. Choosing a cause that speaks to your heart is just as important as choosing a cause at all. If you aren’t into it, it won’t be as effective.

He was also involved. You may pick the best cause out there, but if you hand it off to someone else without putting your personal stamp on it, it won’t be as great as it could be.

Winovich recorded videos for social media, engaged fans and influencers on Twitter and Instagram, and made himself available for interviews. He did all the right things.

Making A Difference Matters

Winovich, his teammates, and his coaches (count head coach Jim Harbaugh who fully supported this initiative) who participated in this fundraiser had fun with it and probably have no idea what kind of impact they made on the Carr family, who struggles through the holidays without Chad.

They also have no idea the impact they made on the DIPG community, which desperately needs this kind of attention.

This was a win all the way around and it’s something every athlete can participate in. Not every player can put something together that will catch the attention of the mainstream media, but every player has the benefit of social media and influence.

Even if your initiative begins as a grassroots effort on social media, watch it take off if you do all the right things like Chase Winovich did. Make videos, engage fans, and really believe in and have fun with what you’re doing.

It’s one of the best things about being an athlete — embrace it.

mother's day dipg

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

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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

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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

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.

DIPG

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

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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

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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.

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.

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Brooke Healey

1 Fact About DIPG That Will Spring You to Action

vote ChadTough

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

It’s Day 4 of voting for the Infiniti Coaches Charity Challenge and it’s already felt like an eternity. Maybe it’s because I feel like I’ve learned an eternity’s worth of life lessons in a short three week’s time.

One of my roles within the challenge is to talk to families who have been impacted by DIPG. Some of these families still have little fighters among them, but most of them have already had to say goodbye. What they all already have in common is that they’ve all endured the news that their child is going to die sooner, not later.

The pieces of their stories are so similar, I can almost close my eyes and envision them. The scary wait for test results. Noticing the doctors can’t look you in the eye. Getting the official diagnosis and the devastating fact that treatment for your child’s disease hasn’t progressed in four decades. Having it sink in that your child has just been delivered a death sentence.

The anger. The loneliness. The isolation.

Jack's Angels

Learn more about Jack’s story at jacksangelsfoundation.com/

One mother described the moments that followed her three-year-old son’s diagnosis so vividly. She took him to a playground outside the hospital to let him run around for a bit. He tried, but the effects of the brain tumor were already setting in. His body wouldn’t do what it was told, resulting in jerky movements that not only prevented his play, it scared the other kids. Her heart broke as she watched her little boy want to be like all the other kids, realizing he would never be like all the other kids again.

It’s hard to imagine the pain.

It’s that pain that places so much importance on this contest, not only for the money that could go toward pediatric brain tumor research, but for the exposure this disease needs. These children don’t have a voice. It’s something I’ve heard Tammi Carr say a number of times, but I’m only just now starting to grasp what that really means.

The thing is, statistics are what is driving research dollars, but statistics don’t tell the whole story. Statistics are not human lives. Statistics are not a parent receiving the news that they will have to watch their child suffer and then succumb to death. Statistics don’t paint the picture of what it feels like to have the whole world move on while you have to watch your child deteriorate and then leave you.

To do nothing as that happens to parent after parent after parent is just not right. It’s time to do something, and taking the time to vote each day for Coach John Beilein and The ChadTough Foundation is a small gesture that could make a big change. Brilliant minds are ready and willing to find this cure, but they need the funds to do so.

In talking with one mother about DIPG and the loss of her son, I asked her what she believed to be the biggest misconception about the disease. I expected her to talk about the benefits a cure would have on pediatric brain tumors and cancers as a whole, negating the belief that researching a rare disease would only help a small number of lives. I expected her to talk about the lack of funds dedicated to childhood cancers, negating the belief that sick children are a top priority in our country.

Brooke Healey

Learn more about Brooke’s story at brookehealey.com

I expected her to talk about brain tumors as the leading cause of cancer deaths among children, negating the belief that this isn’t a huge problem to be addressed.

But she didn’t. What she did say caught me completely off guard. What, I asked, is the biggest misconception the public has about this horrific disease?

“It could never happen to me or my child.”

Think about it. That word – “rare” – can lull you into believing that you and your children are untouchable, but the truth is, you aren’t. It could happen to you. It could happen to your niece, your grandchild, your godson, your friend’s child.

It could happen to any of us.

So, as you read about these children suffering from this “rare” disease, put yourself in the shoes of their parents, grandparents, siblings, friends, and muster up the anger you would feel if you were met with the devastating fact that treatment for your child’s disease hasn’t progressed in four decades.

Then set a reminder on your phone and vote each day for Coach Beilein and The ChadTough Foundation. Your vote may end up being a small part of a big change.

Big Ten Rivals Unite Over Chad Carr

I will be the first to admit that college teams hate one another. Real, stupid, ridiculous hatred. It’s silly, really. Schools with this loathing that reaches beyond human decency, all because of football, basketball, or some other sport. I’ve been there.

It wasn’t because of the school I went to. I went to Eastern Michigan University, a school known for its track, swimming, and women’s basketball teams. An opportunity while in college, however, had me volunteering with the University of Michigan softball and basketball teams, and I quickly fell in love with the Maize and Blue.

Marrying the men’s basketball sports information director only furthered that romanticism.

Because of my marriage, I held strong loyalty for Michigan basketball, but was chastised by my colleagues because I never went to the school. Many of those colleagues went to Michigan State, and their rude nature left me with a sour taste in my mouth. I learned to loathe Michigan State because of it, a mindset that has lasted until recently.

Honestly, I never would have thought that perspective could change.

Enter Chad Carr.

Tammi and Chad Carr

The photo that stole my heart.

The little boy who stole my heart. It started with the photo of Chad and his mom, Tammi, that I saw after my husband came home with the news that Chad had been diagnosed with Diffuse Intrinsic Pontine Glioma, or DIPG. This photo showed Chad looking into the eyes of his momma, and it took me to the many moments I shared with my own two-year-old son. I cried. It hurt.

I then met Chad almost a year later when I helped with his foundation’s 5k in October of 2015 and have since taken on a greater role with his family.

Now the goal is winning $100,000 through University of Michigan men’s basketball coach John Beilein and the Infiniti Coaches Charity Challenge. I truly believe we will win it.

Why?

Because this little boy has united people who previously loathed one another — people who professed hatred for one another simply for the colors they represented. It seems silly, really, in hindsight. That adults would treat each other with such disrespect simply for the team they cheered for.

Said one supporter of The ChadTough Foundation:

My husband, son and I were just sitting in our family room watching ESPN and my husband said, “this is the first time in my entire life that I’ve ever rooted let alone voted for a coach of ‘that team up North.'” He had just finished voting Coach Beilein.

No sooner did those words come out of his mouth, ESPN went to Stuart Scott’s speech at the Espys. This exact line…

“You beat cancer by how you live, why you live and the manner in which you live.”

We just think this is such a true statement and that it perfectly fits Chad and his family. Their journey has taught such valuable lessons…he didn’t need a reminder but he was given anyway. ? Pretty neat!

ChadTough is as cool as the other side of the pillow!!

We all know how much Ohio State and Michigan fans hate one another … yet here is an Ohio State family loving a Michigan family because of a special little boy who has had a power beyond all of our understanding.

Ohio State with ChadTough decal

Ohio State with its ChadTough decal.

There is no point to this story other than to express awe over Chad Carr and the power he has wielded over so many. His sweet face, brave fight, and selfless family have captured America’s hearts. We don’t know how they do it, but they’re showing all of us what it means to live one day at a time and appreciate what we’ve been given.

That, my friends, is why Coach Beilein and The ChadTough Foundation will win the Infiniti Coaches Challenge. Mark my words.