Help Us Make Childhood Cancer History!–

H. Res. 404: Sign-on Letter to the House Majority Leader of the 117th Congress

Sign-on Support Form | Letter to Majority Leader Hoyer | pdf of this notice

We have a unique opportunity RIGHT NOW through the end of this Congress, with your consideration for lending your signature and/or the support of your organization, to see history made for the childhood cancer awareness movement with a vote scheduled for the DIPG Awareness Resolution, H. Res. 404! 

As a mom who lost her son to DIPG, told initially that he would die and there was nothing to be done because he and others like him were not an adequate investment incentive, I discovered over time that I was definitely not alone in my outrage.  In fact, I discovered that, no matter how “rare” DIPG might be, it represents–in all of its horror–a powerful opportunity to raise awareness to the neglect of childhood cancer research investment, as an Ambassador of sorts for childhood cancer awareness, and most importantly, to accelerate a cure as only a quantum leap in national awareness can do. 

We need your help!  After 7 years, 4 Congresses, and nearly 2800 more children lost to DIPG alone since the first introduction of the DIPG Awareness Resolution, we expect to have a solid House Majority of cosponsors signed on before December!  We are making the case to House Leadership that H. Res. 404 qualifies to be scheduled for a vote.  Scheduling is the next step.  This is what this sign-on letter is for!

check here to see if your Rep is a cosponsor  ||| Ask your Rep to sign (we can always use more support)

This will make history for Congress, also, as the Patriot’s Day resolution is the only other of its kind–a “commemorative” resolution includes a designated day of recognition– which has been given this opportunity since 1995.  Excessive overuse (1960s – 1990s) made their restriction necessary, and so our burden has been to make the case that the resolution subject matter meets the requirements for exception which is the purpose of our letter to Representative Hoyer.

Like many of you, I’m tired of hearing excuses as to why this neglect of our children is unavoidable or justifiable, and that corporate interests are more important than our children’s lives. 

We can’t change the system with this resolution alone, but we can make an important beginning with H. Res. 404 for Congress to acknowledge that our children have been systematically left behind, that with greater awareness our collective creativity could be better engaged to fill the gaps and expedite effective therapies for children.  H. Res. 404 asks that pediatric and high mortality rate cancers have greater consideration for research grants, and that federal investment into childhood cancer research in general be increased considering the unmet medical needs of this voiceless population. 

It is probable that, with H. Res. 404 and the increased awareness in Congress of the unmet needs of our children, important childhood cancer legislation will be met with more timely support and less resistance for re-authorizations.

Today we have a chance, a real shot at it!  We have the numbers, the support of the Speaker’s office and Committee Leadership; now we just need the approval of the House Majority Leader as he is in charge of the actual scheduling. We would appreciate your signature of support for this letter to Rep. Steny Hoyer to allow scheduling for H. Res. 404, an unparalleled opportunity to raise awareness and to accelerate a cure for the DIPG death sentence, and bring national attention to the unmet needs of children with cancer.  Children continue to suffer and die from this terrible disease, as with most other childhood cancer types, as you well know, despite our legislative progress. Visit passhres404.com for even more ways to support, on social media, etc…

Action Item #1:

  • Sign-on Form to support
  • #2: send us a picture of your child in an email with his/her name and where you are from, so that your child’s image will be in attendance for the vote!
  • #3: When the time comes, here is a sample note to your Rep which you can reference to write, phone, and email your message supporting a YES VOTE! Again, we need 290!

→ If we succeed in gaining the approval of the House Majority Leader, the NEXT STEP will be rallying the community for the actual vote when it’s scheduled in mid-December, for which the threshold for it to pass will be 290 votes!  We will encourage families to call, write, and email their Representatives encouraging them to support H. Res. 404!  We ask you to send a picture of your child to be present at the vote, for you, to create an amazing celebration of this powerful acknowledgment and triumph for all children with cancer or deadly childhood disease.  This is our #Moonshot4Kids.

For your reference:

Thank you for your kind consideration! We hope this opens the door not only to greater opportunities to support children with cancer, but in encouraging greater participation and hope in the future of our democracy.  

Very truly yours,

  • Janet Demeter, Jack’s mom.
  • Jack’s Angels
  • 32520 Wagon Wheel Rd
  • Santa Clarita, CA 91390
  • jacksangels1@gmail.com

DIPG Advocacy Group’s Congressional/OSTP Briefing in support of the DIPG Awareness Resolution, with Program

Click here for the Program with Presenter time-stamps