Moonshot

Chad and Jack’s DIPG Resolution and Childhood Cancer; is it relevant?

The Resolution is named for Chad Carr of Michigan and Jack Demeter of California, both beloved and perished to DIPG.

…this is about making a decision, a decision to not look away, but to acknowledge the relevance of life.

FullMoon2010I was not too surprised that the brilliant young man who wrote the Resolution for the most part, was on the eve of the its debut once again doubting whether or not it would be received because it singles out DIPG.  The letter below encourages Members of Congress to read the text of the Resolution for DIPG Awareness and consider the importance of the subject matter, DIPG and the neglect of childhood cancers in our medical research system, particularly the NCI in its research grant process.  I want to share it with you to help dis-spell the age old argument that recognizing particular diseases will fail, and that they have no relevance. Getting specific, getting personal, getting real is a necessary part of comprehending the importance of the larger issue.

DIPG exemplifies the tragedy of childhood cancer in a very poignant and startling way.  It sets itself apart in this way only.  To look the other way, when one knows the facts, is unacceptable.  It’s a very powerful fulcrum upon which the whole issue of childhood cancer awareness can be leveraged.  After all, what is childhood cancer awareness?  Awareness of the suffering of others, awareness of its pervasive and predictable recurrence, awareness of its indiscriminate victimization, and awareness that we DON’T KNOW WHAT CAUSES IT.  We can’t cure what we don’t understand.

Until we are aware enough collectively as a society that these children are being neglected in favor of short-term investment profitability, that our science is largely dominated by profit motive before studying nature and ecology, until we understand the detriment to all mankind, we won’t take a stand for these children’s lives.  That requires awareness, and a decision.

Our Vice President Joe Biden called for a ‘Moonshot’ last night, at the State of the Union Address, reminiscent of President John F. Kennedy’s message 55 years ago, “I think we should go to the Moon.”  Vice President Biden is calling for us to make the decision to prioritize finding solutions to cancer, the leading disease-cause of death in the world.  Cancer is the leading cause of disease-related death in children here in the United States.  Coincidentally, Neil Armstrong’s daughter died of DIPG in 1962; however cause of death was called ‘pneumonia’ as loss of respiration is always the last effect before death.  In all of this time, scientists have known about pontine glioma, and as you can see, if finding a solution is not a priority, it can take decades…

And so this is about making a decision, a decision to not look away, but to acknowledge the relevance of life.

This is a letter to Congressman Michael McCaul (R-TX-10), one of the co-chairmen of the Congressional Caucus for Childhood Cancer, to preface the Resolution and encourage support.  Both Congressmen McCaul and VanHollen (D-MD-3) have co-sponsored the Resolution.  The list of supporters will be disclosed after the introduction of the Resolution.  These two men are two of our greatest champions for children with cancer.

Dear Congressman McCaul and Staff,                                                                                               December 30, 2015

New Year’s Greetings!  I stopped by your office in September when I was in town for the Curefest activities, the Summit for the Congressional Caucus for Childhood Cancer, and the White House Briefing for Childhood Cancer.  At that time, I left a brief written message for you which included a letter that I had written to the President on behalf of the mission of Jack’s Angels Foundation, to increase awareness for the urgent need for more research investment for our children with cancer, specifically DIPG, in the possibility of designating a National DIPG Awareness Day.

DIPG exemplifies the experience of childhood cancer in its deadly prognosis and lack of solutions, and the commonly heard excuse that this is so because “the numbers aren’t great enough for investors.”  We work for the day when no parent has to hear this, because currently, this is the reality for many across the United States.  This almost exclusively pediatric disease is responsible for the majority of brain tumor deaths in children each year, and has had no survivors in over 35 years of clinical record.

I’m pleased to inform you that a Resolution is being introduced by Congressman Knight(R-CA-25), co-sponsored by Representative Speier (D-CA-14) with a “Letter to Colleagues” by Congressman Knight’s aide Adam Brooks.   He has been working on the project for the past 3 months with myself and Dr. Michelle Monje of Stanford University, foremost PBTC researcher specializing in DIPG.

Why is the Resolution important?  DIPG children, like so many children afflicted with cancer in some form, have fought this monster in the dark heroically with little to no heralding until this past year with the prominent cases of Lauren Hill of Ohio and Chad Carr of Michigan.  There were hundreds of others like them, and tens of thousands through decades passed.  As you may know, only 4% of our National Cancer Institute budget is designated for pediatrics specifically.  We parents across the United States find this number to be unacceptable, no matter how one tries to do the math.  The Resolution opens the door for a conversation, without stipulating, about giving more awareness and consideration to those diseases with poor survival rates, and relative years of life lost in the research grant process with the National Cancer Institute.

I am hopeful for your support of this Resolution for DIPG.   The public should know about the neglected and regular loss of life of so many very young Americans.  Jack’s Angels Foundation will remain forever obliged to your good will to help shine some light on the situation, and inspire change.  It was encouraging and inspiring to see you and Linda at the Summit and to hear you speak for our children.

Respectfully yours,

Janet Demeter

Should you have any questions, or have not yet received a letter about it and would like to, please contact Adam Brooks with Rep. Knight at adam.brooks@mail.house.gov or 2-4671, or Molly Fishman with Rep. Jackie Speier at molly.fishman@mail.house.gov.

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