Help Us Make Childhood Cancer History!–


Tell the House Majority Leader to schedule H. RES. 404 before the end of the 117th Congress!

  1. CALL Leader Hoyer’s office (202-225-4131) and his floor-vote team: (202-225-3130)and leave this message: “Please schedule vote consideration for H. RES. 404, now, THIS CONGRESS(and anything else you want) Thank you”
  2. CALL your representative’s Washington DC office, and field office and leave a message ASKING THEM to request that the Majority Leader schedule vote consideration for H. RES. 404 (the DIPG Awareness Resolution) before the end of the Congress.

Social Media Toolkit: videos, jpg, sample text, etc.. (–in process of being updated for the weekend and this last phase…

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 have a solid House Majority of cosponsors signed on–220 and growing!  The Speaker’s office has approved, The Committee Leadership has signed off, now it is simply for the Majority Leader to schedule it…amid not only important legislative items, but also post-office namings and other non-urgent items have been scheduled this past week.

Action Item #1 is ABOVE

#2: With a House Vote scheduled, call, tweet, email your REPRESENTATIVE supporting a YES VOTE! WE WILL NEED 290 VOTES FOR IT TO PASS at the time of the vote!! Sample message Our YESvote letter

#3: send us a picture of your child in an email ([email protected]) with his/her name and where you are from, so that your child’s image will be in attendance on one of 5 specially made 24×36 posters on the floor of the U.S. House of Representatives.

check here to see if your Rep is a cosponsor  ||| Ask your Rep to sign –we can always use more pre-vote awareness and support!


–>–>This will make history for Congress, also, as the Patriot’s Day resolution is the only other of its kind which has been given this opportunity since 1995; a “commemorative” resolution includes a designated day of recognition.  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 House Majority Leader Steny Hoyer (MD-5) to schedule a vote.

→ …the NEXT STEP will be rallying the community for the actual vote, 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
  • [email protected]

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