DIPG Symposium

ChadTough Foundation Sees Research Advancement at DIPG Symposium

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The ChadTough Foundation attended the DIPG Symposium this weekend in Cincinnati, a bi-annual meeting for members of the DIPG Collaborative — a group of family foundations with a vested interest in funding Diffuse Intrinsic Pontine Glioma (DIPG) research as a way to find a cure and create a trickle-down affect for other cancer research.

Jason and Tammi Carr have been involved with the DIPG Collaborative since 2015, making the ChadTough Foundation’s first significant gift — $300,000 — to the collaborative last year.

“There are a lot of benefits to this group in terms of research,” said Jason Carr. “As a whole, we have more than $3.4 million to put toward grants for 2017, which is obviously a huge number considering DIPG receives next to no federal funding.”

Each participating foundation has its own capacity for giving, ranging from $2,000 to more than $200,000. The beauty of the DIPG Collaborative is that every single dollar counts.

Progress Over Time

DIPG Symposium

Julian and Brad Boivin. (Photo: courageforcures.org)

Brad and Nettie Boivin lost their son, Julian, to DIPG in 2011. In the more than six years since he was diagnosed, the advances in research and awareness have increased exponentially.

“Julian was diagnosed November 2010,” said Nettie, who lives in Michigan with Brad and their other two children, Mirabelle and Bastian.

“We lost him seven months later in 2011. At that time, we just missed the first-ever symposium by a couple of months. That is when things really started coming together. The ground started swelling and people started figuring out and connecting the dots.”

At that meeting in 2011, there were only a handful of foundations in attendance. This year, there are 31.

“One of the biggest changes (over the past six years) is that there’s such a better grasp on the biology of this disease,” said Nettie.

“There used to only be a handful (of doctors) that specialized in DIPG — now there’s a whole room of them, and they’re trying to figure out how to defeat it.”

Coming Together for a Cause

The DIPG Symposium is unique in that it brings researchers, physicians, and families together in one place. The medical community presents their findings from the grants funded the previous year and then presents proposed grants for the upcoming year.

The collaborative then reviews the proposals, members vote with guidance from the medical advisory board, and researchers are awarded monies.

Last year, the ChadTough Foundation’s $300,000 donation led to four different grants.

“It’s great to have the support and resources of the group, 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.”

The Michigan Difference

Among the doctors and researchers in attendance this year were Drs. Carl Koschmann, Luigi Franchi, and Sriram Venneti of Michigan Medicine.

DIPG Symposium

(L-R) Amanda Ruddy, Chrissie Wywrot, Dr. Luigi Franchi, Dr. Carl Koschmann, Jason Carr, Dr. Sriram Venneti

It means a lot for the Carr family, which has such a vested interest in the University of Michigan and the hospital.

“These are the people who sequenced Chad’s tumor and they’re seeing more DIPG patients at Michigan because families are hearing our story,” said Jason Carr.

“They are encouraged around what’s happening in DIPG research and are getting more involved in it because of Chad. That’s the kind of difference we set out to make.”

The ChadTough Foundation gave $500,000 to Michigan Medicine back in November as part of a three-year, $1.5 million effort to accelerate pediatric brain tumor research.

The ultimate goal is for Michigan to bring in a DIPG-specific researcher to Ann Arbor.

“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.”

How You Can Help

There are a number of ways you can support the ChadTough Foundation and further DIPG research and awareness:

As always, thank you for being ChadTough!

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About Chrissie Wywrot

Chrissie Wywrot is a Marketing Strategist and LinkedIn Specialist honored to serve as the Director of Communications for the ChadTough Foundation. She lives in Ann Arbor with her husband, Tom, and three children. Learn more about her at chrissiewywrot.com.

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