Letters To The Speaker

“Letters To The Speaker” is the final public campaign for
H.Res.114 to get a simple acknowledgement of consideration for scheduling.

The DIPG Awareness Resolution brings attention to children fighting for their lives; House leadership continues to dismiss them on a technicality.

The Office of the Speaker has been dismissive of the children represented in the DIPG Awareness Resolution which raises awareness for DIPG, pediatric brain cancer, and the urgent need for greater research funding for childhood cancer in general.

THE REALITY:

200-400 children are diagnosed annually with DIPG, diffuse intrinsic pontine glioma. Most will be gone after one year. 10% may live 2-3 years. A handful might live 5 years. 1-3 might live a normal life span. Good luck finding them… –> THERE IS NOWHERE ON EARTH YOU CAN GO TO SAVE YOUR CHILD FROM DIPG.

1. Write!

Your own letter, or cut and paste one of ours below, and submit! Speaker.gov/contact

2. Call! 202-225-0100

Tell the Speaker, in your own words or borrow these:

“Please allow consideration for the DIPG Awareness Resolution, H. Res. 114! If you truly are the Voice for the voiceless, you would care about the children facing a terrible death to this disease, and with a simple act of allowing, bring hope and help to a community in desperate need. We must help these children; DIPG must be stopped!”

3. Submit a video message

These will go out on the DIPG Advocacy Group youtube channel and Childhood Cancer Talk Radio facebook page, and on twitter! We will also post them here. Those submitted before Nov. 25 may also appear in a longer rally video airing 11/29. directions flyer.

Do any one, or all of the above; it all helps. Sample scripts below!

SAMPLE: “The urgent need for help for children facing a cruel and untimely death ought to be worthy issue for request consideration under current legislative protocol. Please allow H. Res. 114 scheduling consideration. Brain cancer is the most prevalent form of childhood cancer, and the deadliest. People just don’t know. We need your help.” —It can be that simple: Speaker.gov/contact

Read Our Letter: view or download

The Current Legislative Protocol Concerning Commemorative Resolutions: “A resolution of bereavement, or condemnation, or which calls on others to take a particular action, is eligible to be scheduled for consideration.

In support of the National DIPG Awareness Resolution, H. Res. 114, to raise awareness for kids fighting for their lives, and our scientists need for greater support into cures, you may download or simply cut and paste a letter below to the Speaker of the House, or write your own note. For reference, check out the actual text of the Resolution, and supportive documents, on p. 3 of the General Letter to Congress.

Why is it important?

House leadership determines whether or not the DIPG Awareness Resolution will get a vote, or be passed. We need more voices to be heard. The Office of the Speaker thus far has not given us an official answer, but second-hand, through staff, they’ve said that they will not give our resolution consideration.

Samples provided, to which you can add, or write your own. Pick one.

Cut and paste and then click on the graphic to share your support with the Speaker of the House.

Samples to cut and paste: download or view

https://Speaker.gov/contact  SAMPLES Below


To the Honorable Nancy Pelosi, Speaker of the House of US Representatives,

Please allow our #Moonshot4Kids to have a vote!  Our kids are facing a terrible death and we need to let them know that we care and that we got this–that we’re on our way.  These kids have no hope. With a simple nod  of allowing you could bring our children so much good!

Please help pass H. Res. 114.  Our amazing researchers need more support.  It all starts with awareness.  But, out of sight, out of mind, we’ll continue to move at a snail’s pace.  And the burden of finding a cure and raising millions of dollars shouldn’t be on the backs of those who have already paid the ultimate price.  Our government should step in when it comes to our children.  Please help us move in that direction with this important first step!

Thank you,


cut and paste letter: Speaker.gov/contact


To House Leadership:

The main reason we need you to allow consideration for H. Res. 114,  is the incredible cruelty of the deaths these children with DIPG endure, and for the families who must witness this tragedy in complete helplessness.    95% of the funding for research is provided by parents, because, as we are so often told, our children don’t represent a worthy investment incentive. In the wealthiest country in the world, we discover that our children’s lives and the suffering that they endure simply don’t matter to the system in place.  This is an unacceptable reality in our Great Country.   Also, many childhood brain tumors are diagnosed late or at autopsy due to lack of awareness of their signs and symptoms; respected doctors are often met with resistance from insurance companies for the appropriate diagnostics. With greater awareness, we could help save lives today; please help us raise awareness for this terrible killer of our children!

Thank you,


To House Leadership:

Please allow a vote on H. Res. 114!  

After 5 years, 3 Congresses, and 2000 more children gone to DIPG, please help us alert the world to this killer, that we might find treatments for it more quickly.   It’s tragic that we have to make the case that our  children represent a great enough cause for exception to the ban on “commemorative” resolutions due to frivolous over-use in a different time and circumstance.   Because of these unspoken rules, the  back and forth direction from your staff to go, “ask Committee Leadership,” and vice versa,  is an unacceptable way of handling this issue for hundreds of innocent children currently facing a horrific death.  The current legislative protocol[1] for allowing an exception, were it officially consulted, would within any reasonable interpretation allow a pathway forward for H. Res. 114 to be considered for scheduling.  

We The People are asking for an exception from the leadership of the House of Representatives, consecrated to serve our interests, not special interests.  We do this with optimism and belief in our representative democracy, as we lend our voice to countless lives gone, and countless parents grieving.  At a time of political unrest and cynicism, we submit to you that your attention to our plea is affirming and reassuring of our ideals as Americans.  God bless you, God bless our children, and God bless the United States of America.

Respectfully yours,


To the Honorable Nancy Pelosi, Speaker of the U.S. House of Representatives:

As we approach the end of 2020, the 116th Congress, and our 5th year of advocating for the National DIPG Awareness Resolution designated H. Res. 114, nearly 2000 more innocent children have endured a horrific, terrifying death since its first introduction.  Our fledgling group of bereaved parents have managed to alert nearly ½ of the Membership of the House of Representatives to the deadly prevalence, not rarity, in the childhood cancer space of brain tumors like DIPG.  Brain cancer is the #1 cause of death in children with cancer, and DIPG is responsible for the majority of brain tumor deaths in children, representing on its own a significant portion of the annual childhood cancer death toll. We desperately need help.  There is nowhere in the world you can go to save your child from DIPG.

The main reason we need you to allow consideration for H. Res. 114,  is the incredible cruelty of the deaths these children endure, and for the families who must witness this tragedy in complete helplessness.    95% of the funding for research is provided by parents, because, as we are so often told, our children don’t represent a worthy investment incentive. In the wealthiest country in the world, we discover that our children’s lives and the suffering that they endure simply don’t matter to the system in place.  This is an unacceptable reality in our Great Country.   Also, many childhood brain tumors are diagnosed late or at autopsy due to lack of awareness of their signs and symptoms; respected doctors are often met with resistance from insurance companies for the appropriate diagnostics. With greater awareness, we could help save lives today.

Please allow passage of H. Res. 114! Thank you for hearing us.

Sincerely,


To House Leadership:

Children with cancer have been falling through the cracks of a profit-dominated medical research investment culture for decades.  Change is slowly coming to the space but it is embarrassingly inadequate in the most technologically advanced country in the world.  And why is that?  People do not know that our research system does not prioritize children or the dying.  With the DIPG Awareness Resolution, we are asking for your help in sounding the alarm, attracting financial and scientific resources to the field until we can find more impactful legislative pathways.  It suggests that we do prioritize children and the dying, and that, “Federal funding for research for pediatric cancer should be increased to address the level of unmet medical need for this vulnerable population.”  We call H. Res. 114 our Moonshot4Kids, as there’s been no change in the standard treatment or prognosis for DIPG since 1962, when tragically, Neil Armstrong’s 2-year-old daughter Karen succumbed to the disease. 

Please let our #Moonshot4Kids help our researchers, doctors get the help they. need more quickly and most importantly, bring our kids hope! That we’ve got this!

Thank you,


To the Hon. Nancy Pelosi, Speaker of the House:

One of our greatest childhood cancer champions, and an original cosponsor of H. Res. 114, Congressman G. K. Butterfield, recently fought long and hard in the Energy and Commerce Committee to ensure that The Creating Hope Act at least had four more years, as it didn’t get permanent installation.   The modest allocations in the STAR Act, the pieces left out of these bills like the GAO review of childhood cancer funding at NCI, so they will pass without so much resistance, would be unthinkable if there were greater awareness of the urgent, unmet needs of America’s children with cancer.  By singling out DIPG in an awareness resolution we are using its horrifying powers for good, as it’s difficult to raise awareness for a problem without a concrete example for the average person to inspect.  The larger problem of inadequate treatments for children with cancer is powerfully exemplified by DIPG in H. Res. 114.  

Whether or not these children represent a great enough cause for exception to the restrictions commemoratives banned for frivolous overuse decades ago is seemingly the greatest challenge to their recognition with House Leadership, with whom jurisdiction ultimately rests.  The back and forth direction advocates have received to go, “ask Committee Leadership,” and vice versa,  is an unacceptable way of handling this issue for hundreds of innocent children currently facing a horrific death.  The current legislative protocol[1] for allowing an exception, were it officially consulted, would within any reasonable interpretation allow a pathway forward for H. Res. 114 to be considered for scheduling.  

We The People are asking for an exception for children fighting DIPG/brain cancer,  from the leadership of the House of Representatives, consecrated to serve our interests, not special interests.  We do this with optimism and belief in our representative democracy, as we lend our voice to countless lives gone, and countless parents grieving.  At a time of political unrest and cynicism, we submit to you that your attention to our plea is affirming and reassuring of our ideals as Americans.  God bless you, God bless our children, and God bless the United States of America.

[1] A resolution of bereavement, or condemnation, or which calls on others to take a particular action, is eligible to be scheduled for consideration.  

Very truly yours,


Dear Speaker of the House Nancy Pelosi,

Please allow consideration for H. Res. 114 before the end of this Congress.  With so much complaining about gridlock and not getting anything done, a House vote is pretty simple, isn’t it?  Please allow a vote on H. Res. 114, please let it have a moment.  The immense good which this “Little Bill that Could” would bring our community, the attention it would bring our researchers, the hope, the caring and attention–the good is immeasurable!

To think that the time it would take to pass it is just too valuable to waste on our children is pretty awful, but that’s the indication.  That’s the very message we’re trying to overcome in the medical research system, that our children aren’t worth investing the money.  Well, time, and money are things we don’t have, things our children don’t have.  Please help us.  Please help us raise awareness to the most prevalent and deadly form of childhood cancer:  pediatric brain cancer…and this monster, DIPG.  We have to stop it by calling it out by name.  If a human were going around killing 400 kids a year, we wouldn’t spare any expense.  And there certainly wouldn’t be this resistance to acknowledging the deaths, and the need for help.

Thank you,