Team Jack Founder nominated for humanitarian award

Team Jack Founder nominated for humanitarian award

Friday, September 2, 2016

Written by: John Liesveld

How far do you go when your child faces the one cancer (pediatric brain cancer) with the highest rate of death in the United States, a mortality rate climbing annually to nearly 30-percent?

How far do you go when the first line treatments comprise the same chemotherapy drugs used 30 years ago and complicated by the fact that over 300 types of primary brain tumors exist, each one requiring a different approach to treatment and medication?

And how far do you go when your child’s best hope for a clinical trial exists only through large, research-based institutions on the East or West Coast, far removed from the rural community of Atkinson, Neb., situated on edge of Sandhills’ rolling prairies?

Andy Hoffman and his family can answer those questions; and Hoffman’s recent nomination as a finalist for the NASCAR Foundation’s Betty Jane France Humanitarian Award, represents the culmination of struggles, frustrations and triumphs he faced searching for answers and confronting the distressing uncertainties and deficits in the current research, funding and treatment of pediatric brain cancer.

All nominees receive $25,000 donation to the children’s charity they represent. Additionally, online voting has begun at www.NASCAR.com/Award so that the public can choose the winner, for whom a $100,000 donation will be presented to the children’s charity they represent.

After suffering a life threatening seizure in 2011, Hoffman’s son, Jack, received a devastating diagnosis when MRIs revealed a mass growing on the left side of his brain. Because of the tumor’s location, near the brainstem, surgeons could not entirely excise the growth and doctors declared the remaining tumor inoperable.

It was at that point that Hoffman and his wife, Briana, faced those tough questions and realized just how far they would go after the jolting news of pediatric brain cancer.

“As a parent you kind of go through an evolution,” said Hoffman in an interview with the Fremont Tribune. “You can just sit back and take it … or you can roll up your sleeves and try to fix it.”

The Hoffman family turned up their sleeves and, in Hoffman’s words, started “going at (the problem) the Nebraska way.”

THE FOUNDATION’S CREATION

And one answer, encompassing all those questions, rests with the official creation of the Team Jack Foundation.

“As a family we were shocked and paralyzed and stunned … you begin to learn more about the disease that affects your children and find out the treatments (your child) would be receiving are more than 30 years old,” Hoffman said.

He pointed out the lack of significant funding from the U.S. federal government, citing that each year less than 4-percent of U.S. federal funding is allotted to childhood cancer research, and much less spent on childhood brain cancer research while brain cancer survival rates continue to remain about the same as 30 years ago.

“Childhood cancer needs help with funding from the federal government,” Hoffman said. “We find cures as a nation for the diseases that we invest in. Until we get serious about funding childhood cancer … we are not going to get to where we need to be.”

Despite affecting nearly 4,600 children each year, resulting in a death toll that rises higher than any other childhood cancer, pediatric brain cancer still represents a rare disease, Hoffman explained. And when a single clinical research trial for new brain cancer drugs or pediatric treatments can reach a cost of $2 million, the profit margin fails to attract the attention of big pharmaceutical companies who prefer investments in medication for diseases inflicting large populations.

“There’s just not the financial incentive to for big pharmaceuticals to invest in childhood brain cancer research,” Hoffman pointed out. “It’s not profitable (for them).”

For those reasons and more, Hoffman and his wife Briana created the Team Jack Foundation. The grassroots organization, headquartered in the Hoffmans’ hometown of Atkinson, primarily focuses on raising money and increasing awareness of pediatric brain cancer research. Since its inception in 2013 the nonprofit foundation raised over $3 million for research into pediatric brain cancer and funded five research projects nationally.

Most recently, Hoffman lobbied for a $3 million brain tumor program at the University of Nebraska Medical Center in Omaha. Cautioning that the program is only in the early stages, Hoffman said it will involve bringing a pediatric neuro oncologist to Omaha that could help raise additional awareness among the research community at local and national levels.

“We set out to try and make a difference right here in Nebraska,” Hoffman said, adding that a lot of pediatric brain cancer research trials occur at scattered institution far away from Nebraska, creating difficult logistical and transportation obstacles for many families inflicted by the illness.

“(A child) shouldn’t have a better chance of survival because of where (he/she) lives,” Hoffman stressed.

THE FIRST TOUCHDOWN AND BEYOND …

Young Jack Hoffman of course, represents the crux of this story that ignited the Team Jack Foundation’s far reaching efforts.

And for those who know the story, little Jack – a big Husker football fan – sailed 69-yards downfield, ball in hand, during a 2013 Nebraska Husker football game. Trailed by cheering team members twice his height and probably four times his weight, the scene made national headlines and served as one of the inspirational pinnacles in Jack’s story.

But for Hoffman, watching his son carry the ball downfield, spurred on by the thunderous roar of a stadium packed with Nebraska fans, represented only one part of the whole picture.

“It’s something that we look back on, obviously, with very fond memories …and all the things that happened subsequent,” Hoffman said, referring to how coverage stirred national awareness of pediatric brain cancer.

He explained that the Foundation actually formed prior to the Jack’s touchdown run and had already raised about $300,000. The media coverage served as a platform for the Foundation to raise more awareness.

“(Jack’s touchdown run) just took it to the next level,” Hoffman said.

For Hoffman it was important to keep that awareness at a high level to draw in funding and continue fighting the disease.

“We didn’t want Jack to become the flavor of the week for the media,” Hoffman said. “And we never changed our ways.”

Now, as a finalist for the NASCAR Foundation’s Betty Jane Humanitarian Award, Hoffman sees it as another opportunity to once again increase awareness by acquiring another platform from which to inform people about the devastating effects of the disease. He hopes the nomination can fuel the public consciousness regarding the need for research funding.

“It’s truly an honor to join such a prestigious group,” Hoffman said of the other award nominees. “It’s just one more blessing that’s been given to us in life.”

The nomination may accompany a slight sense of bitter sweetness as Hoffman informed that recent MRIs revealed some movement of the cancer that has been in remission for several years. After five years of dealing with seizures from time to time, Hoffman said his son may “potentially be facing more treatment at some point in the future.”

But Hoffman stands with staunch and vigorous optimism.

“We’ve worked with so many families who have lost their son or daughter to brain cancer,” he said. “When people ask me how Jack is doing, it’s impossible for me to say anything but awesome.”

Read original article here.