Advocacy

#Moonshot4Kids #passhres404  #DIPGwontwait

#moonshot4kids #DIPG #ChildhoodCancer

Congressional/OSTP Briefing 5/17/2022

Congressional Briefing 2/13/2020.  

No one wants to think about children dying. DIPG parents, faced with grief at diagnosis, are not inclined to hopeful advocacy upon losing their child after the hammering experience of learning that your child’s life has no value to our medical research system. Those of us who have had the opportunity to advocate for others work extra hard because we know that we must carry this message–no one else will. We fight for these children’s lives, because they DO matter, and by giving them a voice we bring hope to the survival of those fighting for their lives right now, and the many children yet to be diagnosed to have hope to for a future.

Why DIPG?  The general public and Congress both need a concrete example of what our families endure, as the current narratives in national media sugar-coat the idea of childhood cancer.  The horrific nature of the experience of DIPG and the multitude of deaths which continue out of sight, and out of mind, are a national tragedy largely neglected; this is truly a voiceless population.  The families are most often too devastated to speak out, much less conceive of hopeful advocacy; we are asking our Members of Congress for their help in lending their unique ability to bring national awareness of this terribly suffering where we parents cannot.

With increased awareness for childhood brain cancer, we are confident that lives could be extended or saved immediately with knowledge of the signs and symptoms, of which most parents, caregivers and many pediatricians are not educated.  With awareness and education there would be less resistance from insurance companies to approving the definitive diagnostic tool (MRI), more support for research into cures, and accessible knowledge of possible experimental treatments for families of the newly diagnosed when a matter of days, even hours, can mean life or death.

Dr. Michelle Monje (Stanford University) explains the importance of awareness:

“If we could put a man on the moon and bring him back safely in the 1960s, surely we can find solutions for children with DIPG…the same disease Karen Armstrong died of in 1962, for which treatment and prognosis have not changed in all those years.”

The scheduling of “commemorative” resolutions was restricted in the 1990s due to excessive overuse at that time.  Only one other exception has been made for Patriot’s Day, for 9/11.  We believe that our children facing the deadliest cancer known to mankind ought to be worthy of an exception, to helps speed a cure more quickly and to educate about childhood brain cancer, the deadliest and most prevalent form of cancer in children.  The ONLY way to a cure is to TARGET the killer.  All else is wishful thinking.  People simply do not know about this ruthless killer of children.  If there were a person running around killing upwards of 400 children in our country every year, you’d better believe we’d spare no expense at tracking him.

DIPG Advocacy Group:  We Support Advocacy for Children with Cancer…

DIPG Advocacy Group is a coalition of childhood brain cancer foundations, individual childhood cancer advocates who have come together expressly for the purpose of supporting the National DIPG Awareness Resolution in US Congress.  We support the efforts of the Alliance for Childhood Cancer, The Children’s Cause for Cancer Advocacy, and the legislative efforts of Kids V. Cancer.  We began the DIPG ADVOCACY GROUP to organize support  for the National DIPG Awareness Resolution in US Congress.

Our National DIPG Awareness Resolution, which you can download below, is a completely grassroots effort in its message which is representative of the experience and interests of children with cancer and their families, exclusively.  DIPG exemplifies in a powerful way, for all childhood cancers, the urgent need for more research funding to save lives.   It was not written to please any other large organization with lobbying power, or government agencies themselves.  On behalf of children facing certain death and their families, we insist on there being a conversation about it at the highest possible levels of advocacy and government, that children and the dying be priorities in our medical research system.  Currently, they are not.

text The National DIPG Awareness Resolution, 116th Congress

Past Legislation…the rest of this page is kept for posterity.

Since the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 and its re-authorization failed, parents have been aware that less than 4% of our federal budget for cancer research benefits pediatric research.  This is disproportionate to the urgency of need, and the #Morethan4 movement to storm the NCI, in 2015, served to express public distaste for this fact.  The aforementioned bill contained a Government Accountability Office investigation as a provision, in order to identify within the NCI the challenges to specifying adequate funding for pediatric research.  The current STAR Act with programs for survivorship, treatment, access and research included a similar provision, but the latest news tells us that the original fact-finding process is not included but watered-down significantly.  Hence the need for national awareness and conversation regarding this devastating, chronic lack of adequate research funds from our own government for pediatrics.   The need for the People to be heard regarding this is important and could significantly help other legislation currently under consideration.  #Moonshot4Kids  Where adequately funding pediatric cancer research should be a no-brainer, advocates are consistently met with opposition.

The following organizations are our champions for current legislation and policy influence which has been successful in the last year.

• Kids V. Cancer, http://kidsvcancer.org

• The Children’s Cause for Cancer Advocacy, http://childrenscause.org

• The Childhood Cancer Alliance, http://allianceforchildhoodcancer.org
• Coalition Against Childhood Cancer, http://CAC2.org

Why Advocacy Is So Important Right Now

Roughly 4% of our NCI budget(and this is in need of an update by NCI or GOA for cancer research benefits pediatric cancer research, even though cancer is the leading cause of death of any disease in children.  Jack’s Angels work in helping to create the DIPG Awareness Resolution addresses this issue by asking for more consideration for survival rates and years of life lost with the NCI research grant process.  Please help it to pass; no other surviving legislation for childhood cancer has been able to adequately address the lack of research funding for pediatric cancer, and it must needs be addressed.  Please support STAR, RACE, 21st Century Cures, Creating Hope, and DIPG Awareness.

House:  www.house.gov/representatives/find            Senate:  www.senate.gov/index.htm

The National DIPG Awareness Resolution does not allocate funds by law but it does do something VERY IMPORTANT that none of the other HR (force-of-law) bills do:   it calls for elevated consideration for low-survival rate cancers and years of life lost (our children) with the National Cancer Institute research grant process. It also honors, by designating May 17  as National DIPG Awareness Day,  the thousands of children who have perished to DIPG, and brings attention and support to those currently fighting for their lives. 

Press Release from December 2018 DIPG Advocacy Group

Original Press Release from Congressman Knight’s Office            Action Days Press Release

 HRes.586:  A National Resolution for a DIPG Awareness Week debuts in 2016

After working diligently through 2015 to raise awareness for the need for more consideration of DIPG and low survival-rate childhood cancers, we’re very pleased to announce that House Resolution 586, “Chad and Jack’s Excellent Agreement”, in loving memory of Chad Carr of Michigan and Jack Demeter of California, honors tens of thousands of our children who have heroically faced certain death over recent decades and done so mostly without heralding or fanfare of any kind.  The DIPG experience has been for many families isolating, lonely, and emotionally decimating in its uncompromising fatality.  Our primary purpose is to help change this for children who have yet to be diagnosed with DIPG in the future and their families.

Article About HRes586–“Moonshot for Kids”

Actual TEXT of HRes586

This Resolution would not exist had it not been for the “Just Say It!” campaign, and two trips to CureFest in Washington DC.  As an advocate for children with brain tumors, I cannot stress enough the importance of involving oneself in the collective movement and connecting with others working for the same cause.  If you want to advocate for children with cancer, go to CureFest!  Participate in the Summit of the Congressional Caucus for Childhood Cancer, and ask to participate in the White House Briefing.  Be the voice!!

“JUST SAY IT!” Campaign for  a National Day becomes a WEEK

After decades of obscurity, 0% survival rate, feelings of insignificance and agonizing grief at diagnosis for families, and thousands of cumulative deaths,  it is time.  It’s time for DIPG to come out of the dark.  2015 original press release:   PRESS RELEASE  

  Philanthropy 2016-17:  Funding Creativity   #runforDIPG

 “JUST SAY IT!” –D. I. P. G. Campaign

Most of the high-profile cases of terminal cancer in the news media in 2015, including Lauren Hill and AJ Peterson, had DIPG; did you know it?    DIPG exemplifies the tragedy of childhood cancer in that, DIPG, like most all other childhood cancers, is marginalized as a “rare” or “orphan” disease, although it is responsible for the majority of pediatric brain tumor deaths each year, has no survivors in over 35 years of clinical record, and comes in the regular frequency of 200-300 diagnosed annually.   There has been no progress in the survival of pediatric brain tumors in over 40 years, according to the National Brain Tumor Society, and the field is urgently in need of support.  With regular frequency, for decades, children have been dying of brain tumors with little being done to research the causes and conditions, with windy arguments made for research investors and numbers, completely inadequate in terms of human value.  While we have developed many life-saving therapies for adults, little is done, in comparison, for our world’s most precious commodity:  our children.

Help us encourage the President to make an Awareness Proclamation for DIPG!  We just had National Hot Dog Day for Heaven’s sake…visit the Petition for more information.

 RUNNING CHANT:  Let there be- a NATIONAL DAY- for DIPG–2016!

 DIPG is almost exclusively pediatric, with the poorest survival rate in over 35 years of clinical record.  Brain tumors are the leading cause of cancer-related death in children, yet one of the very least-funded areas of cancer research.  When one poses the question as to why no effective therapies have been developed, the answer seems to be consistently that the “numbers” (200-300 per year) aren’t great enough for research investors.  Meanwhile, only 4% of our tax dollars allocated for cancer research by the National Cancer Institute are designated for all pediatric research.

Help us to make a commitment to our children with our actions and words; tell your representatives in Congress and the President to make our children with terminal cancer a National Priority.

We support the DIPG Research Fund at Children’s Hospital Los Angeles, our local/regional Children’s Research Institution with a strong neuro-oncology program.  This fund is under the direction of Dr. Girish Dhall, Director of the Neural Tumors Program.  It is our goal to raise $1M for this fund, and to encourage the formation of such funds at every Children’s Research Institution in the US.

Erin Griffin, the beautiful girl in this video sadly passed away from DIPG September 2014.  Dr. Charlie Teo, internationally renown neurosurgeon, expresses that the lack of funding for research is truly the only barrier to our making progress in treating brain tumors:

Our beginnings and our MISSION

Our mission is to improve awareness for DIPG, one of the most devastating pediatric malignancies with virtually no survivors, the urgent need for research, and to support the afflicted.  The foundation’s beginnings were inspired by the love and support our local communities of Agua Dulce, Acton, and Santa Clarita, California,  from the diagnosis 10/28/2011, of James-William “Jack” Demeter, with Diffuse Intrinsic Pontine Glioma, or DIPG.  We are committed to affecting change in the experience of a family receiving a DIPG diagnosis for their beloved child, that there be active research and hope for survival.

Our happiest accomplishment of 2013 is the “for Jack” DIPG research fund at Children’s Hospital Los Angeles, and thus our campaign to ‘Count to a Million!’ –continues, as does our desire to see such a research fund at every major children’s research institution neuro-oncology clinic in the US.  Please join us in our attempt to be supportive to  those families and dear children who are diagnosed with DIPG, in their walk down this road.    Jack lived 9 months past his diagnosis date, the median survival time for DIPG.  Please consult the “About DIPG” page for more information about this illness.

Donating to Jack’s Angels supports DIPG research at Children’s Hospital Los Angeles, programs like Project Angel Box and our community programs and events for children.  Donations specified for a purpose will be honored.  Currently we have no sponsors and are solely dependent upon community and volunteer support.  It costs money for any business to survive; we appreciate support for our organization’s activities.  It makes fundraising for research and outreach to the afflicted possible.   Thank you for your consideration, and your generosity.

“We were told, ‘…there’s nothing we can do; we don’t know the cause, and we can only provide temporary relief with radiation; no chemotherapies have changed the terminal outcome…’, and yet, no one was taking data from us.  No samples, no testing, no forms, no nothing.  We got an enormous book from CureSearch of forms, that I think was standard for any child diagnosed at the hospital with some form of cancer, but nothing that addressed the urgent need for research, real research…  This is an UNACCEPTABLE REALITY.  All of our research hospitals across the country ought to have data programs for the families to have the opportunity to contribute their life history/lifestyle/genetic information; we could be actively looking for the “non-existent” common denominators of DIPG.   All research centers ought to have the advanced genetic testing/data-collaboration capability.  We have the technology; God knows the doctors would like to be able to do more.  And as more and more families suffer from DIPG, it won’t be long before the status quo’s unacceptability is too strong in our collective consciousness to ignore.  This is now my personal mission.”   –J. Demeter, Jack’s mom