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.
May 14, Santa Clarita, CA–what began in 2014 in California as the first State Awareness Resolution for DIPG, diffuse intrinsic pontine glioma, the deadliest and the 2nd most common pediatric brain cancer, has become a national phenomenon for childhood cancer awareness. The first DIPG awareness resolution in 2014, ACR151, was inspired by the compassion of then CA State Assemblyman Scott Wilk upon discovering the story of a local family who lost their son to DIPG, and Jack’s Angels, the charity through which they began to raise awareness to the devastating lack of research funding for pediatric brain cancer. Jack’s Angels was born of the experience which so many families have no choice but to endure: a death-sentence at diagnosis and a brush with the reality of our medical research system and the way research is funded, that there are no solutions because “the numbers aren’t great enough for investors.” According to Janet Demeter, founder of Jack’s Angels, this experience has been one of the strongest motivations for her advocacy work, as the current system, unlike the typical emergency room, is “devoid of concern” for these children’s lives for all practical purposes.
This Thursday, May 17, 2018, CA-State Senator Scott Wilk (District 21) will introduce the 2018 DIPG Awareness Resolution in California with several representatives of DIPG families attending, at the California State Capitol in Sacramento, CA. It will also be DIPG Awareness Day in upwards of 25 other States, as 2017 saw 22 States due to the efforts of advocates and affiliates of the Michael Mosier Defeat DIPG Foundation in Bethesda, MD, the organizing influence for the “DIPG Across the Map” Project which began organizing at the level of the States for DIPG in 2016, designating May 17 as DIPG Awareness Day.
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. Research for brain cancer has been historically underfunded, such that the same standard treatment protocol of radiation is used today for DIPG as was used 50 years ago, with the same prognosis: terminal. 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. DIPG research straddles the frontiers of both neuroscience and oncology; despite the lack of funding from the private sector and the federal government, the uprising of dozens of foundations led by bereaved parents have been, collectively, footing the bill for some of the most groundbreaking research in genetics, neuroscience, and personalized medicine.
Both raising funds and awareness to the urgent need for research are an herculean effort for bereaved parents in a culture which is largely unaware of the suffering which continues in quiet desperation, yet boasts the greatest wealth and technological capability in the world. “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. 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,” clarifies Demeter.
The National DIPG Awareness Resolution, H.Res.69, was first introduced to the 114th Congress as H.Res.586 in January of 2016, by Congressman Steve Knight (R-CA-25) who was CA-State Senator in 2014 when the first Resolution appeared in the California Legislature. For the 2017 introduction to the 115th Congress, H.Res.69 designates May 17 as the National Awareness Day for a congruent effort with the “DIPG Across the Map” project in the states. Most importantly, it confronts the inadequacy of our current system to address the needs of the pediatric cancer population, and suggests that high-risk cancers and years of life lost have greater consideration in the research grant process in the public and private sector. “We have to fight so hard to pass childhood cancer legislation, and to make sure the NIH gets adequate funding; my hope is that this ‘little bill that could’ might raise greater public awareness to the neglect of funding for pediatric research, that the fight might not be so terribly long and difficult, that the STAR Act, Kids First 2.0, RACE and 20th Century Cures Act would be undeniable,” says Demeter about the importance of H.Res.69.
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 800 children, roughly, passed away in the United States to DIPG. The larger childhood cancer advocacy organizations did not put H.Res.69 on their agendas for their “action days” in Washington in 2017, so H.Res.69 supporters began their own advocacy group with international reach. Since the work of the group began, 12 more co-sponsors have signed on to H.Res.69. “The challenge of the House, though the resolution only needs a House Vote, is daunting. We’re asking Congress for help to raise awareness, yet we’re stopped by the lack of awareness. Most House Members don’t know it’s there, and the Energy and Commerce Committee has done nothing with it while less consequential bills with political import have sailed right through. It’s very frustrating; we need either 200+ cosponsors or a suspension of rules–which should be possible as the rules and attending protocol states, but we’re just little guys asking,” Demeter explains, not without pessimism for the probability of getting a House Vote in time for Thursday.
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; “the crushing DIPG experience doesn’t lend itself to immediate enthusiasm for advocacy,” explains Demeter. Senators McCain, Rubio, Cruz, and Gardners staff have given supportive feedback for a Senate Resolution on the Republican side so far, with the staffs of Reed, Warner, Warren, and Harris on the Democrat side indicating support during their last trip to Washington in April 2018, according to Demeter and other sources within the group.
Still, DIPG Awareness Day will 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 CA Senator Scott Wilk Thursday morning at 9am sharp, and then turning back to make it home in time for the 6th Annual Powderpuff Football Game at Vasquez High School in Acton, CA. When asked why she had to make it back for the game she replied, “It’s so important to acknowledge our kids and the fact that they can and will change our world for the better; 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 half-time honors Principal Ty Devoe, Assemblyman Acosta, Senator Wilk, Congressman Knight, The Country Journal, KHTS Radio, Santa Clarita Magazine, and the Santa Clarita Valley Chamber of Commerce, and others; the game startis at 6pm at Jorgensen Field at 33630 Red Rover Mine Rd. in Acton, CA. For more information about H.Res.69, visit www.hres69.org.
Jack’s Angels Foundation
32520 Wagon Wheel Rd.
Santa Clarita, CA 91390
DIPG Advocacy Group Letter and Resolution Text for the House