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State House bill would allow taxpayers to support research for DIPG, other children’s cancers

DIPG Awareness Day in PA

Families of children who died of DIPG, a form of childhood brain cancer, gather in Harrisburg in support of a bill for research funding. From left, family of Ayden Kohler of York, Alexandria Kohler (sister); Cathy and Bill Kohler, (parents); family of Dylan Spriggs of East Coventry Township, Aaron and Amanda Spriggs (parents); state Reps. Thomas R. Caltagirone of Reading and Perry Warren of Bucks County; family of Aidan Dunion of Amity Township, Tara and Patrick Dunion (parents), Caitlin Dunion (sister), Ryan Dunion (brother), and Margaret O’Neill (grandmother).

The state House of Representatives has voted unanimously to recognize Wednesday as National DIPG Awareness Day in recognition of a deadly form of childhood brain cancer that’s taken the lives of several area children.

Now state Rep. Thomas R. Caltagirone is hoping to raise awareness further by giving state taxpayers the option of donating to pediatric cancer research. The Reading Democrat sponsored House Bill 46, which passed the House in April and would establish a box on state income tax forms that taxpayers could check to donate to childhood cancer research.  The donations would be deducted from the taxpayers’ refunds and would go to hospitals that are doing such research and have been designated by the state Department of Health.
Families with children who have suffered from diffuse intrinsic pontine glioma, or DIPG, are hoping the bill passes the Senate, and on May 10, three of those families received a standing ovation on the House floor.  They were the Dunion family of Amity Township, whose son Aidan, 4, died in August 2014; the Spriggs family of East Coventry Township, whose son Dylan, 6, died in July, and the Kohler family of York, whose son Ayden, 10, died in March.
4Ayden Strong

Ayden Kohler

“The families with us today know all too well the stark realities a DIPG diagnosis brings,” Caltagirone said. “Patients, in these cases children, usually have about nine months to live.”
The scientists, doctors and advocacy groups working to fight this and other forms of cancer, many of whom call Pennsylvania home, deserve our attention and support. Their work is nothing less than the work of miracles for families facing these heartbreaking fights.
“The box on state income tax forms would not only raise much-needed funding but also awareness about childhood cancer, said Tara Dunion, Aidan’s mom.
“Before Aidan was diagnosed, we had never even heard of DIPG,” she said. “We knew of childhood cancer, but were unaware of the impacts or the overall lack of funding or that brain tumors are the leading cause of cancer-related death in children.”
It’s likely that many others in the public are unaware that an average of 46 children are diagnosed with cancer each day, and seven die from cancer, Dunion said. Or that only 4 percent of the taxpayer-funded National Cancer Institute’s annual budget is directed toward pediatric cancer. Or that a child diagnosed with DIPG today faces the same prognosis – no chance of survival – as a child diagnosed 50 years ago.
dylan spriggs

Dylan Spriggs

The bill is currently in a Senate committee, and will expire if it doesn’t receive Senate approval by June 30.
Amanda Spriggs, who is Dylan’s mom, urged those who want to help find a cure for DIPG and other childhood cancers to contact their state senators in support of the bill.  
She said while DIPG is termed a rare disease, with between 200 and 400 children diagnosed in the U.S. each year, it didn’t feel rare when her son was in Children’s Hospital of Philadelphia getting radiation treatments, and she met other families dealing with its devastating affects.
“Being able to check a box to donate to such a noble cause seems like an easy decision to make,” she said.
Dunion pointed out that because DIPG is one of the cancers most resistant to chemotherapy, finding a cure or prevention for it could help with other forms of cancer as well.

About the Author: 

Reporter Mike Urban covers general news for the Reading Eagle.
Phone: 610-371-5023

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