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.
Program, transcripts and timelines for each presenter can be found in this synopsis: https://dipgadvocacy.org/wp-
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.