DIPG Awareness Day

May 17, 2017 is Diffuse Intrinsic Pontine Glioma (DIPG) Awareness Day in the State of Michigan.

“Awareness” is defined as “knowledge or perception of a situation or fact,” as well as, “concern about and well-informed interest in a particular situation or development.”

It is also playing a significant role in improving research and care for DIPG.

Champions for Change

DIPG Awareness DayDr. Francis Collins, the director of the National Institutes of Health (NIH), was the keynote speaker for May 13th’s Champions for Change Gala. How he came to be the keynote speaker is a prime example of awareness.

Dr. Collins’ granddaughter, Bailey, was inspired by the ESPN feature that ran shortly after Chad Carr’s passing in November 2015. That inspiration and awareness led to action: she and her friends knitted finger scarves to sell at school to benefit the foundation.

The girls raised $550 for the cause, but their involvement didn’t stop there. Bailey made sure to tell her grandfather about Chad and the dire situation that needed a hero.

“She didn’t even know that this was something her granddad was working on back here at NIH until after the fact,” Dr. Collins told Frank Beckmann on WJR radio last week.

The Importance of Awareness

The truth is that we don’t know who has the power to make real change until we spread the word. Bailey had no idea her grandfather was an influencer in the medical research community until she shared Chad’s story.

“Awareness is a key piece of our fight,” said ChadTough Foundation Co-Founder, Tammi Carr. “Depending on who is on the receiving end of Chad’s story, it may lead to a scientist choosing to take a deeper look into DIPG, an individual donating money to fund research, or a physician having more compassion for patients who come through their hospital.”

It has also created a funnel of support for families faced with a DIPG diagnosis. Tammi is regularly put into contact with families looking for direction, and many are ending up at Michigan Medicine.

“I was so thankful to have other families to talk to when we were fighting,” said Tammi. “It is a club no one wants to belong to, but we absolutely need each other.

“I’m humbled to help in any way I can.”

Money (and Change) Flows Toward the Loudest Voices

Last year, on the two-year anniversary of Chad’s DIPG diagnosis (Nov. 23, 2016), The ChadTough Foundation announced a $1.5 million gift to Michigan Medicine as part of an accelerated pediatric brain tumor initiative.

The ultimate goal is to raise $30 million to fund a pediatric brain tumor center at the hospital.

“We announced at last Saturday’s gala that we have raised $20 million to date,” said ChadTough Foundation Co-Founder Jason Carr.

“It’s exciting to see real change taking place as a result of people hearing about Chad and what he went through.”

Thanks to The ChadTough Foundation and other advocates — the majority of which have lost a child to DIPG themselves — word is continuing to spread that something must be done.

The Importance of May 17

May 17 has a special meaning for the family that headed the “DIPG Awareness Across the Map” campaign – Mark and Jenny Mosier lost their son, Michael, on this date two years ago.

They set out to make May 17, 2017, DIPG Awareness Day in each of the 50 states, successful in 19 of them. The hope is that each plea for better funding and awareness will result in more research dollars and more scientists dedicated to the cause.

“Once people become aware of the vicious nature of this disease, it’s difficult to just let it go,” said Tammi Carr. “I’ve spoken to so many who recognize this can’t go on — we’ve got to make a change.”

Spread the Word

You can spread the word on DIPG Awareness Day!