CAC2 Member Blog–#Moonshot4Kids

By CAC2 Member Janet Demeter, Jack’s Angels

Did you know that brain cancer is the leading cause of death in children with cancer?  It’s also one of the least-funded areas of cancer research.  DIPG, diffuse intrinsic pontine glioma, is perhaps the deadliest of them all.  The experience of DIPG is a terrible wake-up call:   with no viable solutions, the discovery that profits and numbers count more than the value of your child’s life, DIPG exemplifies in a profound way the experience that so many children with cancer and their families endure–to watch their children die in utter helplessness.

We would like to share with you an historic event for DIPG, pediatric brain cancer, and childhood cancer in general which took place just two 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.  We’re asking your support for H. Res. 114, our #Moonshot4Kids.

Watch the video to our Congressional Briefing here:

Program, transcripts and timelines for each presenter can be found in this synopsis:  https://dipgadvocacy.org/wp-content/uploads/2020/02/textversionBriefings.pdf

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 excuse to do nothing except passive, slow motion forward is unacceptable–unconscionable to me, as it is to most all parents.

Thank you for your kind attention; please look to updates at https://dipgadvocacy.org, “Advocate with Us” page about our campaign for the finish line for H.Res.114.  We’re at almost 100 cosponsors; we need your help to get more, and also appeal to House Leadership to support revisiting the rules in light of the urgent needs of children with cancer.  Full Letter to community link.