Feb. 29, 2020
To the Childhood Cancer Community:
We would like to share with you an historic event for DIPG, pediatric brain cancer, and childhood cancer in general which took place just 2 weeks ago on Feb. 13, 2020 in Washington DC. Despite advances in leukemia and progress with childhood cancer survival rates in recent years, most exclusively pediatric cancers remain without viable solutions, most notably pediatric brain cancer, the leading cause of cancer-related death in children. DIPG, the second most common type, is responsible for the majority of pediatric brain cancer deaths annually. It has seen no progress since Neil Armstrong’s daughter died of it in 1962, neither in standard treatment of radiation and palliative care, nor in it’s terminal prognosis with a less than 1% long-term survival rate.
Click here for Briefing Program and Transcript
As a founder of our advocacy group which actively supports #Moonshot4Kids, the DIPG Awareness Resolution H. Res. 114, I must let you know in no uncertain terms that this “little Bill that Could” has come straight from the #Morethan4 movement in 2014-2015. At my first White House vigil at Curefest in 2014, I discovered that with DIPG we had a unique opportunity to have an ambassador for childhood cancer, for deadly childhood disease. These are all marginalized as rare due to their small patient populations (relatively speaking) as an excuse to the lack of funding into cures for them, despite the terrible urgency of need for solutions. This problem of our kids falling through the cracks of the medical research system is what has driven me to advocacy. There was nothing for my son and we had to watch him die because, “the numbers aren’t great enough for investors” in the wealthiest country in the world. This excuse to do nothing except passive, slow motion forward is unacceptable–unconscionable to me, as it is to most all parents.
And so I’m asking you to realize #1 that this Resolution, H. Res. 114, exists, #2, that it is meant to raise awareness to all deadly pediatric disease–it’s meant to raise awareness for your children too, and to support the hard-fought and desperately needed, modest allocations for childhood cancer legislation–and robust funding for NIH. These things should be a no-brainer (excuse the pun) but without awareness, not much will change. Without a concrete example of reality amid all the commercials touting great survival rates for kids, there’s no way for the public to know the truth of our situation.
And so, #3, I’m asking you, as a community that does care about our children, our conservative family values as a society in word and deed, to please support this initiative for urgently needed awareness for DIPG, pediatric brain cancer, and the true state of childhood cancer in general. Don’t be fooled by its name, that it makes DIPG more important somehow. No! Let us use it, in all its horror, to be fuel for good for all our kids. I’m begging you to please help us get this simple, apolitical House Awareness Resolution passed this year. Since it’s first introduction in 2016, another 1600 children have died of just DIPG not counting the others; DIPG won’t wait.
The information shared at the Briefing was powerful but will go nowhere without your sharing it. A portion of the video in which Jace Ward boldly makes a statement for all of our children both who have fought hard and paid the ultimate price, and who will never have a voice, and for those who are fighting for their lives right now. We ask you to share it as much as possible. Direct links to transcripts and the video are shared below.
Thank you for your kind attention, and for all the amazing, back-breaking work you do to move the needle forward for all of our children. It shouldn’t be so darn hard, but it is. It is my greatest hope that passing “the little bill that could” help alert the powers that be, the greater public, and big philanthropy for our need for support for pediatric cancer research and data sharing, that indeed, it represents the cutting edge of several important scientific frontiers, but most importantly, saving our children’s precious lives. God bless you all on this journey together.
Sincerely yours,
Janet Demeter
Jack and Sophie’s mom.
Agua Dulce, CA
Jack’s Angels Inc
DIPG Advocacy Group
Congressional Briefing video: https://youtu.be/ga38lFTaLWg
Jace Ward’s portion: https://youtu.be/UoEVLRzbis0
Congressional Briefing transcripts and program: https://dipgadvocacy.org/wp-content/uploads/2020/02/briefingpaneltext.pdf