Face the Four Percent! It's not ok with us!

Jack's Angels Foundation was inspired by the life of my son Jack (8/30/08 - 7/30/12) diagnosed with diffuse intrinsic pontine glioma (DIPG), the 2nd most common pediatric brain tumor which has no long-term survivors since Neil Armstrong's daughter died of it in 1962. It is arguably the deadliest cancer, and for the 200-400 kids who are diagnosed each year in the US alone, it is literally cancer's death row. Sadly, our medical research system is dominated by profit motive rather than urgency of need, so that in all of this time, year after year, the choice has been made to put our Government research funding elsewhere because "the numbers aren't great enough for investors." Unfortunately this happens with all pediatric cancers, marginalized as rare--thus was my initiation into the childhood cancer community.
Because of our advocacy with Jack's Angels (pediatric brain tumor awareness and research, and advocacy for children with cancer) and the work of Congressman Steve Knight (R-CA-25), we saw HRes.586 introduced to the House of Representatives 1/13/16, a day after the Moonshot Initiative to cure cancer was announced. I waited patiently to read the briefings from the White House, but pediatric cancer was a mere after thought, appearing at the very end and mentioned as a "very rare cancer" to which now we might be able to give more attention... We in the Childhood Cancer Community have been screaming for more--in fact we have been demanding a Moonshot for years, literally, using the example of putting a man on the moon in the 1960s because it was a priority, and so there is no reason we cannot save these kids on cancer's death row. But they need to be a priority. HRes586 (text) asks for more consideration for the deadliest cancers and years of life lost with the NCI research grant process with the National Cancer Institute. It also designates the 4th week in May to be National DIPG awareness Week, finally heralding the thousands of children who bravely faced their death, and to those currently fighting to stay alive, that they know we are fighting for them.

I hosted a Moonshot Regional Summit and found the provisions for pediatric cancer lacking, as the only paradigm offered was that of asking what more incentives could we create for the private sector, while the glaring 4% issue with our Government funds was completely ignored.

Help us raise awareness so that kids dying of cancer will be a higher priority issue in our country and around the world; thank you!