Thank you R-cosponsors; last chance for H. Res. 69, meeting request DIPG Advocacy Group, Dec. 3-5

(Letter was sent to:  Barbara Comstock (VA-10), William Hurd (TX-23), Lamar Smith(TX-21), John Duncan (TN-2), Ryan Costello(PA-6), Scott Perry (PA-4), Duncan Hunter (CA-50), Andy Barr (KY-6), Daniel Donovan (NY-11), Brian Fitzpatrick (PA-8), Chris Collins (NY-27), Evan Jenkins (WV-3), Lou Barletta (PA-11), Steve Stivers, (OH-15), David Joyce (OH-14), and cc’d to Steve Knight (CA-25) author)

Dear staff of Republican cosponsors of H. Res. 69,

DIPG Advocacy Group is coming to Washington next week to encourage a House vote on H. Res. 69 before the end of session; we would appreciate your consideration for a brief meeting.  The DIPG Awareness Resolution has been in committee with no attention for three years while other bills of significantly less import have sailed through without problem.  We are not inclined to agree with the idea that this Resolution is not important enough to be considered for 10 minutes on the final day, as roughly another 1200 children have died of DIPG since we have been waiting for three years.  If you would, please consider this exchange I had with Paul Ryan’s staff.  It has literally taken me three years to have the opportunity to reach them:
1. I initiated with the “Letter to House Leadership” and a request for a staff meeting for our group.
2. This was the response from Allison Steil:
“Thank you for reaching out. Unfortunately, given my boss’ upcoming retirement, we are currently unavailable to schedule meetings during your visit to DC. We appreciate your understanding.”
Best,  Allison
Allison Steil | Deputy Chief of Staff
Congressman Paul D. Ryan (WI-01)
3. This was my reply:
“Thank you for your response Allison; are any staff members willing to meet with our group? I’ve met with staff in House basement before, or Longworth cafeteria etc…
The Speaker is still attending to his duties until the end of the session is he not?
We would appreciate so much just 5 minutes for this bill. It’s been sitting for three years while so many more children have perished.
Parents in the childhood cancer community desire very, very strongly more national awareness and conversation about the urgent need for viable solutions for our kids and the larger bills do not address this, nor has the Government Accountability Office investigation into the challenges within NCI to getting adequate resources been approved with the STAR Act. It never happened with the 2008 Caroline Pryce Walker bill.
Nothing has changed significantly for our children, and nothing will without greater public awareness.
We are asking the House for help.
Thank you for your consideration.
Sincerely yours, etc.
If you would, if ever there were an occasion to use your Republican affiliation, just as importantly if you are retiring, to pull off a brazen feat of “power for Good”, this would be the time.  With all the earnestness at my command, I implore you to please, help us get a House vote on H. Res. 69.  It will only take a matter of a few minutes, and will bring hope to thousands, and a real possibility for public awareness of this relentless human suffering which desperately needs attention–in the wealthiest country in the world!!
Everyone will get a refreshed copy of the information this week; I’m attaching Congress2.pdf, and there’s an online link here:  bit.ly/HVote69
Thank you so much for your consideration and support for H. Res. 69.  It is your compassion for these children that has kept our Group’s hope alive to pursue this.  The end of the line isn’t the time to give up!  It’s time to truly be a hero for these kids!
Thank you and God bless you,
Janet Demeter

DIPG Advocacy Group

Janet Demeter, Organizer (CA), Paul Miller (CO, US West), Elizabeth Psar (TN US South) Vicki Thomas (NY, NJ Metro), Walter and Michele Cramer (NJ US-NE), Kirsten Finley (FL, SC, LA), Bill Kohler (PA), Robin Dodd (KY, MT); stopkidscancer@gmail.com, ekspar@gmail.com, thomasvictoria0725@gmail.com, wcramer6@yahoo.com, kirsten@cannonballsforkayne.org, bill@4aydenstrong.com, robin.dodd@uky.edu

 

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