To the Leadership of the US House of Representatives

June 18 pdf. version

DIPG Advocacy Group and the undersigned organizations are asking for your attention to H. Res. 114, the DIPG Awareness Resolution, and thus to the leading disease-related cause of childhood mortality in the United States:  pediatric brain cancer.  After 4 years have passed and a third introduction, little has changed for these children.  As we clearly outline below, little has changed for them in decades.  By the end of this session of Congress and roughly 2000 more deaths from DIPG alone, we request that with a significant showing of bipartisan support for this Resolution you would allow giving it due consideration for a House vote by suspension of rules.  From your unique position, we are calling upon your moral integrity as leaders of the House of Representatives, that body designated with the most direct source of representation for  the American People by our US Constitution, to help us to raise greater national awareness to this hidden tragedy in American life, that the appropriate resources and creativity would be alerted to this urgent, unmet need in our society today.

Amid a barrage of commercials asserting that 80% of children survive cancer due to our success with certain types of leukemia, DIPG is truly the hidden, untold story of childhood cancer.  Brain cancers lead in childhood cancer incidence and lead in childhood cancer deaths. DIPG, diffuse intrinsic pontine glioma, is the 2nd most common pediatric brain tumor and the leading cause of death in children afflicted with brain cancer, represents a significant portion of the annual childhood cancer death toll.  There has been no change in its standard treatment protocol, nor its prognosis, since Neil Armstrong’s daughter Karen died of it in 1962.  You may not have heard of DIPG because most all of the children die and the families are devasted and not prone to hopeful advocacy.  The few of us who can speak out, speak for countless others who cannot. We are asking for your help.

DIPG is not the success story people want to hear, but until we have more awareness of this tragedy in our society today, solutions for children with brain cancer will remain elusive; modest allocations for childhood cancer legislation will continue to be a fight for our advocates where there should be little question.  Parents will continue to hear that there are no solutions for their children, as they helplessly witness their decline and death, because “the numbers aren’t great enough for investors” in the wealthiest country in the world.  By simply allowing this Resolution to move forward, you have the power to bring hope and to affect change, to help bring needed attention and resources to our scientists who need more support for this crucial, and valuable, research which now is funded almost entirely by parents who have already paid the ultimate price.

As Covid-19 exposes weaknesses in our system of health care, so pediatric brain cancer exposes the failure of our medical research investment system to address the urgent, unmet needs of our most vulnerable population–our children.  In the past four years (114, 115, 116 Congress) of our bringing this message to Washington, there has never been a convenient time to consider the needs of children with DIPG brain cancer, and the terrible reality of their situation:  while retaining full cognitive awareness, DIPG children lose control of their bodies–with some in great pain and neurological duress–as with tumor progression eventually respiration ceases.  They are aware of their impending doom as their parents struggle to reckon with it, failing to provide solutions or feel adequate in guiding them to their end, though they try with all their might.  This cruel experience has continued unchecked for decades, in obscurity and darkness; from diagnosis these children and their families have no hope.  “Go make memories,” parents routinely hear.   It would be tragic still if this movement for awareness for childhood brain cancer were to become another casualty of the pandemic when all we are asking for our children is a day of recognition, and greater awareness to this urgent, unmet need in our society today of our most vulnerable citizens, a motion which would only support, and not detract from other measures important to national interest in this time.

With national recognition and with the awesome power of the House of Representatives, there is hope of alerting needed resources, of inspiring the ingenuity and creativity of the world to help find solutions for our children facing certain or probable death.  “Commemorative days” designated by the House were banned presumably due to overuse.  H. Res. 114 is a clear case meeting the criteria used for previous exceptions made (115C, Protocol 7, Rule 28), and the humanitarian benefit is unquestionable; we submit to you that the original reasons for, and context of this ban with respect to this resolution, ought to be reviewed.  We ask you in all earnestness, in making your decision whether to allow consideration for a vote, to please put the potential benefit to our children in the balance with this question:  what possible harm could it bring?  Please ask yourselves, as ones who truly value America’s children, “which has more import to our citizens”–not to the current politics of the House, but to the American People it was consecrated to represent?

Thank you for your consideration for our children with DIPG, brain cancer and deadly disease neglected by the system in place.  You do possess the power to bring hope to pediatric brain cancer with a simple nod of allowing.   In a bipartisan way, 119 Members of the House of Representatives have signed on to H. Res. 114. Please allow our “Moonshot4Kids” a chance to bring hope and much needed attention to a dire situation, this Congress; we humbly ask.  Thank you.

In gratitude we remain

Respectfully yours,

DIPG Advocacy Group

The undersigned:

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