Congressman Knight Champions Awareness Legislation for Forgotten Children

January 23, 2018, Santa Clarita, CA–Amid an intensive political landscape in 2018 persists an National Awareness Resolution, H.Res.69, 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[1].  Troublesome is the fact that there has been no change in the standard treatment protocol nor the terminal prognosis for DIPG in over 50 years; Neil Armstrong’s daughter Karen, aka “Muffy”, died of DIPG in 1962.  

Katelyn, mother Jo Sandoval, and Janet Demeter at CHLA 1/15/18

Despite the fact that cancer is the #1 disease-related cause of death in our children in the United States, it is one of the least funded areas of cancer research[2].  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[3].  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.

Braylynn perishes to DIPG 1/15/18, FL, father’s reaction

This date of May 17 was agreed upon through the work of the Michael Mosier Defeat DIPG Foundation in Bethesda, MD, which worked to create the 2017 “DIPG Across the Map” project with the goal of getting all 50 States to make such a Proclamation, and so H.Res.69 was revised accordingly for a coherent effort for DIPG.  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.  “DIPG raises awareness in a powerful way to the neglect of research funding for pediatric cancers in our medical research industry.  All exclusively pediatric cancers are marginalized as rare and receive little to no research funding, no matter how deadly, no matter how many lives they continue to claim.  It’s kept very hushed, and survival statistics are misleading to tout industry.  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.  She concludes, insistently, “I’m asking all locals to join this leadership in asking your friends and family across the country to encourage their Representative in the House to sign their names to the bill, and to thank Steve Knight!”

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.

[1]  Pediatric Brain Tumor Foundation, www.pbtf.org, National Brain Tumor Society, www.braintumor.org.  [2] ACCO American Childhood Cancer Organization, www.acco.org, [3]It first was introduced 1/16/2016 to the 114th Congress 2nd Session as H.Res.586, which then became H.Res.69 with re-introduction to the 115th Congress in January of 2017 with May 17 designated as DIPG Awareness Day.  May is Brain Tumor Awareness Month.

 

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