May 17 is Diffuse Intrinsic Pontine Glioma (DIPG) Awareness Day in the State of Michigan. This is considered a significant victory for The ChadTough Foundation and other DIPG families across the country … but why? What purpose does awareness serve?
A big one.
This past weekend, The ChadTough Foundation attended the DIPG Symposium in Cincinnati, Ohio. The one message conveyed over and over is how much the event had grown since its inception in 2011. Back then, doctors were guessing at what drugs and procedures would have an impact on DIPG. Now, they are digging deep into the molecular structure of the tumors and learning more and more about what drives them.
“It’s great to have the support and resources of the (DIPG Collaborative), and it keeps growing,” said Jason Carr. “It’s obvious researchers are gaining knowledge around what is happening within these tumors, which will lead to understanding how we may be able to treat them.”
All of this was made possible through awareness in three key areas:
Researcher and Physician Interest
From a medical perspective, DIPG is a tough road to hoe. First, there is next to no federal funding for research, meaning those who choose this path will rely on private, family foundations to fund their projects. Second, it is emotionally draining.
“There’s so many factors that push one away from dealing with this,” said Dr. Mark Souweidane of Weill Cornell. “One is the obvious: these kids die. Who wants to live in an environment where there’s such tragedy from a parents’ standpoint? Watching young kids pass away (is not easy).”
Finally, the researchers have an uphill battle considering the lack of knowledge around DIPG. Nettie Boivin can see how much the group of researchers and physicians focused on DIPG has grown since her son, Julian, passed away in 2011.
“Once you’ve treated family with DIPG, you’re hooked,” she said. “You’re like, ‘this can’t go on.’ Since 2011, the numbers that have grown in this (medical) group and the awareness that has really come about — especially in the last year with Lauren Hill and now Chad — has catapulted DIPG into a different realm than it’s ever been. So we’re extremely grateful for that.”
Researchers can want to focus on DIPG, but without tissue, are handcuffed in terms of what they can do. That is why tissue donation by those who have lost their children to DIPG is so critical. It’s a devastating decision to have to make, and one that physicians have historically avoided asking bereaved parents.
“You’re signing these postmortem biopsy forms — their autopsy forms — and it’s very depressing,” said Jaime Rieck-King, who lost her daughter, Katie, to DIPG in June of 2016.
“I’m sitting at my desk and I turn to my right and there’s my child alive, and I see this picture of this body. This is the (actual) form the person doing the autopsy is going to fill out. It’s very hard to imagine.”
As difficult as it is, it’s a decision more and more families are making.
“It is the most selfless and greatest gift that (any family can give),” said Nettie Boivin. “It’s such a terrible moment and then it’s just this gift because who knows what kind of ripple effect it’s going to have for these other families.
“So as we’re giving up our own children — we have to say goodbye to them — it’s giving birth to hope for what’s next and for other families.”
Many of these families follow what is happening with their child’s tissue at the labs they reside, knowing that their child is living on in such an important way.
“I can go and see the last piece of her any time I want to at Stanford,” said Jaime Rieck-King. “You can’t even see the tumor — you have to use a microscope to see it — but one of those little specks could be the answer.”
Since DIPG is considered rare in the medical community, researchers and physicians rely primarily on private foundations to fund their work. These private foundations are typically led by families who have lost a child to DIPG.
“(There are) all of these families who are so dedicated to making a difference, and pouring their hearts and souls into it,” said Jenny Mosier, who lost her son, Michael, in May of 2015. “Those are the very families who have had to endure the loss of their child, which is just an incredible emotional burden that will always be carried.
“Sometimes I’ll feel frustrated or a little weary about the whole thing,” said Jenny. “Then there are things like this big Giving Tuesday initiative we did this year. We ended up raising over a hundred thousand dollars on Giving Tuesday. Days like that really re-invigorate our efforts.”
The more individuals learn about DIPG and the devastation it causes, the more those individuals are driven to help. Often times, that’s in the form of a monetary donation which — in the case of The ChadTough Foundation — goes directly to DIPG research.
“It’s incredible to see how far we’ve come just in the short time ChadTough has been in existence,” said Tammi Carr, “and seeing donations put to real use in the research community should make all of our supporters proud – every single one of them is making a real difference for DIPG.”
The Power of Awareness
You can spread awareness around DIPG on May 17 by talking about the cause on social media or in person. Share posts that will be published on The ChadTough Foundation Facebook and Twitter accounts.
Every little bit counts.
“It’s a moment in time that almost gives us permission to talk about something that may be unrecognized or underappreciated,” said Nettie Boivin.
“It gives momentum to act — it’s a good time to gather a community that is invested in this particular issue, to come together and have a platform to speak on.”