January 30, 2018, Santa Clarita, CA–One year ago today, Congressman Steve Knight (R-CA-25) introduced with Congresswoman Jackie Speier (D-CA-14) H.Res.69, the National DIPG Awareness Resolution to the House Energy and Commerce Committee. The Resolution persists today, amid an intensive political landscape in 2018, for children with the deadliest pediatric brain cancer, DIPG: diffuse intrinsic pontine glioma. Not only does the bill call for an Awareness Day for these children and their families, May 17, it asks that our medical research industry take into greater consideration research funding for pediatric and high-risk cancers. Brain cancer is the leading cause of death in children afflicted with cancer, and DIPG is responsible for the majority of those deaths annually in the United States, yet it remains one of the least funded areas of cancer research.
In this way, DIPG epitomizes the experience of a pediatric cancer diagnosis: there are few options because “the numbers aren’t great enough for investors.” Families are left to watch and wait in utter helplessness as their child fades from this earthly existence, not knowing exactly when, how, or ultimately why. “If there were one thing I could help to change, it would be that experience,” relates Janet Demeter, a local mom and activist for DIPG and children with cancer.
Congressman Knight’s attention to his constituent’s activism for children with cancer and specifically for DIPG led to the writing of H.Res.69. Jack’s Angels Foundation is local to his district and President Janet Demeter first worked with Steven Knight when he was CA State Senator, along with then CA State Assemblyman Scott Wilk (now CA State Senator) in 2014 for the writing of ACR151, which declared the fourth week of May to be DIPG Awareness week. This was the first appearance of DIPG Awareness in the realm of legislation. In this last year 2017, 21 States declared an Awareness Day for DIPG, including California thanks to current Assemblyman Dante Acosta, all concurring on May 17 as written in H.Res.69. 2017 Santa Clarita Mayor Cameron Smyth graciously added the City of Santa Clarita to the list of observing cities and states of May 17 as DIPG Awareness Day.
Just this last December 2017, the DIPG Advocacy Group, a creation of Jack’s Angels, took its first trip to Washington DC in support of the Resolution to encourage activity within the House Energy and Commerce Committee where it was introduced. “Our children with cancer have been falling through the cracks and loopholes of the system for decades; H.Res.69 at least brings it to national awareness with the hope of some real conversation about solutions. We have Steve Knight to thank for that, for championing a bill that lends a voice to thousands of children who will never have one,” maintains Demeter, who has managed to attract volunteer support for the DIPG Advocacy Group from across the United States.
For more information about H.Res.69, the DIPG Awareness Resolution, the DIPG Advocacy Group, and Jack’s Angels Foundation, visit www.hres69.org, an advocacy website for H.Res.69, and www.jacksangels.org, Jack’s Angels home website. The DIPG Advocacy Group also can be found on Facebook for news, updates and conference calls.