Two separate resolutions are set to be introduced Thursday to the California and U.S. legislatures in an effort to raise awareness for Diffuse Intrinsic Pontine Glioma, a deadly pediatric brain cancer commonly known as DIPG.

On Thursday, May 17, State Senator Scott Wilk, R-Santa Clarita, is set to introduce the 2018 DIPG Awareness Resolution at the State Capitol in Sacramento, alongside several representatives of DIPG families.

On the same day, House Resolution 69 is set to be discussed at the U.S. Capitol in Washington D.C. The National DIPG Awareness Resolution was first introduced to the 114th Congress in January 2016, by Congressman Steve Knight, R-Santa Clarita.The current bill designates May 17 as the National Awareness Day.

“We have to fight so hard to pass childhood cancer legislation,” said Janet Demeter, founder of the Santa Clarita-based nonprofit Jack’s Angels, which raises funds for research into the disease. “My hope is that this ‘little bill that could’ might raise greater public awareness to the neglect of funding for pediatric research.”

May is Brain Tumor Awareness Month, and brain cancer is the leading cause of death in children with cancer, hence its importance in the childhood cancer community. DIPG is responsible for the majority of brain tumor deaths in children annually in the United States, according to officials.

“The importance of DIPG is in its example; all pediatric cancers are marginalized as rare and receive inadequate research funding, and the resulting experience of hopelessness is unacceptable,” said Demeter. “The intensity and prevalence of human suffering, in the case of our children with brain cancer, is largely ignored or placated with commercial images and skewed statistics about survival for children with cancer. Most people simply don’t know that our children are not a priority, unless pediatric cancer directly impacts them or someone very close to them.”

DIPG is a diffusely infiltrating malignancy originating in the pons, the area of the brain stem responsible for neural impulses and transmissions to and from the body to the brain. DIPG is an extremely aggressive cancer, so the two most prominent challenges to treating it are its location and the efficacy of the chemotherapy used, as traditional systemic chemotherapy has shown no significant effect on the terminal outcome.

The DIPG Advocacy Group, an association of individuals and DIPG foundations led by Jack’s Angels, began in December of 2017 with an initial trip to Washington DC to raise greater awareness for the bill, which had, at that point, been sitting in the Energy and Commerce Committee for two years without attention while another estimated 800 children died in the United States from DIPG, according to officials.

“The challenge of the House, though the resolution only needs a House Vote, is daunting,” said Demeter. “It’s very frustrating; we need either 200-plus cosponsors or a suspension of rules, which should be possible as the rules and attending protocol states, but we’re just little guys asking.”

The DIPG Advocacy Group has already moved to petitioning the Senate for help, as the DIPG community is better organized at the level of the states than that of Congressional Districts, according to Demeter.

Senators John McCain, Marco Rubio, Ted Cruz and Cory Gardner have all given supportive feedback for the resolution from the Republican caucus, with several Democratic senators, including Jack Reed, Mark Warner, Elizabeth Warren and Kamala Harris, indicating their support during a meeting in Washington in April, according to Demeter and other sources within the group.

Still, DIPG Awareness Day is set to be heralded in over half of the United States this year as many will be keeping their fingers crossed for a House vote. In California, Demeter and several other moms will be driving to Sacramento for the Senate presentation with Wilk Thursday morning, and then turning back to make it home in time for the sixth annual Powderpuff Football Game at Vasquez High School in Acton.

“It’s so important to acknowledge our kids and the fact that they can and will change our world for the better,” said Demeter. “Vasquez High School has been supporting Jack’s Angels since our first year and any success we have had in our mission is largely due to those kids and the local support of the Santa Clarita Valley Chamber of Commerce and our local media outlets.”

An awards ceremony at halftime is set to honor Principal Ty Devoe, Assemblyman Acosta, Senator Wilk, Congressman Knight, KHTS Radio and the Santa Clarita Valley Chamber of Commerce, among others.

The game starts at 6 p.m. at Jorgensen Field at 33630 Red Rover Mine Rd.

Ed. Note: This above information was provided to KHTS by Jack’s Angels.

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