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.

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

Defeat DIPG

It’s the Lack of Hope that Hurts DIPG Kids the Most

In addition to writing features about children (The Faces of DIPG) throughout the Infiniti Coaches Charity Challenge, I feel compelled to journal my feelings.

Parents are opening their minds, souls, and spirits to me, helping me understand what it must feel like to be on the receiving end of such horrific news: your child is going to die. Because with DIPG, there is no hope as things currently stand. There is no percentage of children who have survived. There are zero. Sure, the phrase is “less than 1 percent survive,” but that is more or less a technicality. None survive.

As an outsider who has not experienced DIPG firsthand, hearing that no children survive this disease is one thing. It (rightfully) conjures up responses such as:

“Wow, how horrible.”

“That is unacceptable.”

“Something must be done.”

Each of those statements is correct, but they don’t capture the horror of the decision families have to face upon diagnosis.

Option #1: Radiation

Team Lily LaRue

Another precious face of DIPG. Learn more about Team Lily LaRue on Facebook.

I could say there is no cure for DIPG, but that wouldn’t do the lack of a cure justice. There isn’t even adequate treatment for DIPG. The “treatment” option for kids diagnosed is radiation: high-energy particles or waves, such as x-rays, gamma rays, electron beams, or protons, to destroy or damage cancer cells.

The only problem with treating a child with radiation to destroy or damage cancer cells is that it also destroys healthy cells. It can also result in a number of extremely unpleasant side effects such as nausea and inflammation, which physicians treat with steroids. Steroids then cause their own wealth of side effects such as weight gain, mood changes, and a ravenous appetite.

All to buy additional months. Not years. Months.

And radiation therapy doesn’t always work.

So parents choose to treat their child with radiation, hoping that it will temporarily reduce the tumor and buy them precious months with their child, but the treatment itself causes so many side effects and doesn’t always work.

Option #2: Clinical Trials

The thing about clinical trials is that they provide hope where there is no hope. Could the next clinical trial offer a treatment option that gives a family more time? The possibility has to be intoxicating.

But there are a number of ugly truths about clinical trials, including but not limited to:

  • Parents are experimenting with their child’s body. A clinical trial is doctors testing a theory. Not only may the child potentially receive a drug in far too high of a dose, they may receive a drug for an entirely different cancer. Will a drug designed for pancreatic cancer help a child with DIPG? What about ovarian cancer? It’s all unknown and the child is the guinea pig.
  • Parents must get a spot in the trial. How awful does it sound that kids must win a lottery to take part in a trial? It’s a sad truth. Trials are not open to everyone. I’ve even heard stories of parents who were told they had a spot in a trial only to travel to the hospital and be turned away because “circumstances had changed.”
  • DIPG Parents have few options. Not only are there limited spots in clinical trials, there are limited DIPG-specific trials. If the trial is for neuroblastoma, will it really help a child with DIPG?

Option #3: Go Home and Love Your Child

No, really. That’s the last option.

Can you imagine walking into a hospital to get your child checked out for concerning symptoms, learning he or she has an inoperable brain tumor, and then being told “your guess is as good as mine” by the medical staff?

That’s essentially what happens to these parents in more ways than one. Doctors know so little about this disease that the parents are in charge of treatment. The parents decide the path to take because there is no path to take.

Parents can fill their child with drugs and radiation with the hope of squeezing out a few months of quality life or choose to take their child home and watch them deteriorate bit by bit.

What would you do?

Option #4: Let’s Make A Change

Defeat DIPG Michael Mosier Foundation

Learn more about the Michael Mosier Defeat DIPG Foundation at defeatdipg.org.

How about we write in a final option: let’s make a change.

And before you shrug your shoulders and wonder what you could possibly do in the face of this huge problem, know that there is hope. For the first time in decades, tissue samples are being collected, giving researchers the ability test in a lab instead of on children. In the past few years, life expectancy for DIPG has increased from 3–6 months to 9–12 months. That may seem like nothing, but it’s progress.

Think about it: leukemia was considered a death sentence just 50 years ago. Now, some forms of leukemia carry a 90-percent survival rate. It took focus and funding.

Approximately 90-percent of funding that goes toward DIPG research comes from families who have lost a child to the disease. That is a huge burden for the families to shoulder, but they are weathering the storm to ensure other families don’t have to live their nightmare.

It is also because of those families that researchers have tissue samples. Approaching a family preparing for or grieving a child’s death to ask for tissue samples isn’t the easiest thing to do, but it’s critical in finding a cure. As families of these children come together and love on one another, that message can be spread and changes can be made.

vote ChadTough

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

For The ChadTough Foundation, the No. 1 thing that will help takes very little effort: vote for Michigan head coach John Beilein and The ChadTough Foundation in this year’s Infiniti Coaches Charity Challenge. Stick with it for the long haul and vote each and every day at espn.com/infiniti.

It may just mean $100,000 for The ChadTough Foundation and DIPG research.

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.