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.

DONATE      VOTE

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.