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Today is DIPG Awareness Day: Here’s how we can all help

Wednesday, May 17 has been designated DIPG Awareness Day in Michigan – a cause that holds a special place for many, including us at Extend Your Reach.

DIPG (Diffuse Intrinsic Pontine Glioma) is a rare type of pediatric brain cancer that is found in the Pons of the brain stem. Each year, approximately 300-350 children between ages 5 and 7 are diagnosed with DIPG.

Currently, the long term survival rate is less than 1%, with the median survival rate at 9 months.

And despite the grim outlook for children and families affected, there is little funding dedicated to researching DIPG. In fact, only 3% of federal funding for cancer research goes toward solving pediatric cancers; and pediatric brain cancers only receive a sliver of that funding because they are considered “rare”.

But there is a silver lining.

There are organizations working hard to bring awareness to DIPG and to provide funding for the research that will someday save young lives. And there are things that you can do to help, too. Hang tight; we’ll get to those in a few minutes.

If you don’t mind, we’d like to use this DIPG Awareness Day to highlight one local organization who is fighting to give hope to future families affected by DIPG: The ChadTough Foundation.

 

First, a little background.

In case you’re wondering what DIPG Awareness has to do with marketing or mail, we’ll tell you upfront: there is none that we can think of. Rather, the connection we have to DIPG is through… running?

For the past two years, Reach President Amer Gerzic has run the Grand Rapids Half Marathon – first on his own, then as part of myTEAM TRUIMPH, an organization that gives children and adults with disabilities the chance to participate in road races. Since he started running, though, Amer has had the goal of completing a full marathon on his mind. That’s why he jumped on the opportunity to run as part of Team ChadTough.

Team ChadTough is a group of 42 runners from seven different states who were recruited to run on behalf of the ChadTough Foundation. Come October, they will don their orange singlets (Chad’s favorite color) and tackle the 26.2-mile course for the Bank of America Chicago Marathon.

Oh, and they’ll collectively raise more than $100,000 for the ChadTough Foundation.

“I think what got me was the fact that ChadTough raises money for a rare form of pediatric cancer,” said Amer of his decision to run for Team ChadTough. “To learn that your child has any form of cancer, and then to find out that it is a rare brain tumor, would be devastating to any parent and family. I don’t believe we should accept the idea that there is a finite amount of resources that we can dedicate to solving something as horrible as DIPG.”

 

About ChadTough

That is the same mentality shared by the ChadTough Foundation, which was established in 2015 by Jason and Tammi Carr to be the lasting legacy for their beloved son, Chad.

Chad was diagnosed with DIPG in 2014 (at age 4) and fought the disease for 14 months, with the support of his parents, two older brothers, and the entire Ann Arbor community. (The Carrs are well-known throughout Michigan, as Chad was the grandson of Lloyd Carr, a longtime head coach for University of Michigan football.)

When Chad died in November 2015, he left behind a family and community who wanted to do all they could to ensure that families affected by DIPG in the future would hear something other than “your child has cancer and there is nothing we can do.”

Thus the Foundation was born, with the mission of raising awareness and funding research to increase the survival rate of pediatric brain cancer.

They haven’t stopped working since.

The Foundation organizes and hosts a variety of fundraising events to further their mission, including a ChadTough Garage Sale, their recent Champions for Change Gala, and beyond.

Their efforts are paying off, too. Through funding from foundations like ChadTough, advancements in neurosurgical techniques, and donations of tumor tissue for research, there are now numerous clinical trials taking place at major medical centers across the United States – as well in other countries – that are finally showing promise.

But there is still much work to be done, which leads us back to why Amer felt so compelled to run on behalf of The ChadTough Foundation.

 

Running for a cause

“As a developer, I love statistics and probabilities. But when it comes to tragedies like this, I don’t think numbers should play such a big role in which diseases get more funding,” Amer said.

So instead of settling for a sliver of 3%, Amer and other members of Team ChadTough are running to raise the funds themselves.

As part of Team ChadTough, Amer has committed to raising $2,500 to benefit the Foundation. He hopes that his participation will help bring awareness to DIPG and the importance of cancer research, and said that being part of the team has positively impacted the training process for his first ever marathon.

“Raising money for a cause makes me accountable to the donors and the Foundation. It can feel like pressure – but the good kind of pressure that will get me through the rain, the cold, or the pain.”

 

So how can you support DIPG research and the ChadTough Foundation?

If just thinking about running 26.2 miles makes your legs (and your brain) hurt, don’t worry – there are plenty of other ways to help the ChadTough Foundation further their mission:

  • Donate.
    The ChadTough Foundation has committed to raise $1.5 million to support the The University of Michigan Pediatric Brain Cancer Research Initiative. If you’re financially able, please consider donating to the foundation. You can donate to Amer’s fundraiser on behalf ChadTough here. You can also view the entire Team here.
  • Help create awareness.
    An easy way to contribute is by helping spread the word about DIPG and the fight against it. According to the ChadTough Foundation, every little bit counts when it comes to creating awareness. Beyond generating valuable donations for research, sharing information about DIPG helps educate families who are affected, and may even lead them to donate tissue from their child’s tumor to research.You can share the mission of ChadTough by talking about the cause on social media or in person. Follow The ChadTough Foundation on Facebook, and share their posts or posts from other family foundations that are working to solve pediatric cancer.
  • Volunteer.
    If you live in Southeast Michigan, consider volunteering to help with ChadTough fundraising events, or even with small administrative tasks like stuffing envelopes. You can join the Foundation’s “Bench List” to receive an email notification when a volunteer opportunity arises.
    If you’re looking for a smaller commitment, volunteer to be a ChadTough Champion. You can visit the ChadTough Champion page to sign up and request more details.

 

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