National DIPG Awareness Resolution

NATIONAL DIPG AWARENESS DAY May 17, 2017 H.Res.69

Track progress of bill   /  Sitting in Health Subcommittee

…of the House Energy and Commerce Committee.

Call key representatives offices to support H.Res.69!  Instructions below on this page!!

medallion

Commemorative medallion for “Relay for Jack” supporting H.Res.69

This Resolution is the result of the advocacy of bereaved parents for DIPG children and their families.  There has been no progress in standard treatment protocol nor the prognosis of certain death for DIPG children for over 50 years.  Diffuse intrinsic pontine glioma is the 2nd most common pediatric brain tumor and is responsible for the majority of brain tumor deaths in children.  It’s the one you don’t want to get, but 200-400 children are diagnosed with it in the United States alone regularly each year who’s lives are mercilessly taken from them without a glimmer of hope, which their parents must witness in the agony of utter hopelessness.

H.Res.69 is an attempt to raise awareness to this unacceptable reality and to send a strong message of support to the afflicted, and to finally honor the tens of thousands of children who have bravely faced their death in recent decades with little to no attention or hope.

H.Res. 69, was introduced to the House Energy and Commerce Committee on January 30th, 2017, and it will need your support to pass!  Read and download our instructions for calling your Representative or read them below this video of Pennsylvania Legislature’s Tom Caltagirone:  

HERE IS A FORM-LETTER you may use and modify to write to your Representative in support of H.Res.69.

This is the National Resolution which complements and supports the 50-States Project of the Michael Mosier Defeat DIPG Foundation, “DIPG Across the Map”, with the date of May 17, 2017 as the first National DIPG Awareness Day.  

The Resolution does something very important:  it asks for greater consideration for mortality rate of a type of cancer and children in our medical research system–both with our government funds for research and the private sector.  No other HR bill for pediatric cancer does this.  Let our values of ‘saving lives first’ and our ‘children are our future’ be reflected in the landscape of the medical research system.  Act now in contacting your Congressional leader to support this!  Let’s get it signed and passed before May 17.  The 2017 text may be viewed here.  Please familiarize yourself with it.

Click on the picture  to participate in our Virtual Walk/Run for Action days!  Get a beautiful medallion, stop watch, and official bib number, and walk/run your event on action days!–posting pics on facebook at Jack’s Angels Foundation, Run for DIPG, or Just Say it!–DIPG–the Run for a National Day!  Use the hashtags #CureDIPG #RunforDIPG #DefeatDIPG , #HRes69 (I may have a twitter event for that hashtag!)

Press Release for H.Res.69

Wanna Help?  Advocate with Us!

 House Energy and Commerce Committee and Health Subcommittee

H.Res.69, National DIPG Awareness Day, May 17

Dear Friends,                                                                                                                                                       May, 2017

The National DIPG Awareness Resolution needs support to be passed this year; ideally, we’d like to see it passed before the Big Day, May 17!  Calls and letters to your representative in Congress are the most important, and come first.  However, H.Res.69 sits in the House Energy and Commerce Committee and will not be up for a vote in the House until it comes up for vote in Committee.  We also need your help contacting the offices of Energy and Commerce Committee members in support of H.Res.69, if you will.  Update:  the bill is in the HEALTH SUBCOMMITTEE  The following are key  members to call:

Burgess (TX-26) Chairman, Brett Guthrie (KY-02) Vice Chairman, Joe Barton Chair of E&C Committee (TX-06), Gene Green (TX-29) Ranking Member, Greg Walden (OR-02)-Ex Officio (V.Chair E&C)–All numbers are listed below!  First and foremost, call your Representative in Congress for support.  Visit www.house.gov to find them.

Below is a text that can be read or improvised upon for use in phone calls and or in written letter.  Listed on p. 3 are members of the House Energy and Commerce Committee and their office phone extensions in format 202-225-(- – – -), the last four already retrieved and provided for you.  In order for the entire House of Representatives to support and vote on the Resolution, it must first pass a vote through this Committee.

Feel free to use our banner, or if you are affiliated with another childhood cancer organization, identify it to verify the legitimacy of your appeal if you are calling as a non-constituent.  Considering that in Washington most offices are open 9am-6pm ET, cordially invite the Representatives to consider supporting H.Res.69, the National DIPG Awareness Resolution, in a Committee vote using the key points in the following script when you call:

“Hello, my name is _________________ on behalf of (organization—ie Jack’s Angels for pediatric brain tumor awareness and research), (and/or personal story) and I’m calling in support of H.Res.69, (House Resolution 69) the National DIPG Awareness Resolution, which was introduced to the Energy and Commerce Committee January 30th.”

“H.Res.69 humbly asks that mortality rates and children be more highly considered in our medical research system, and designates May 17 as National DIPG Awareness Day.  Routinely, parents of children diagnosed with DIPG hear there are no solutions for their child and then must witness in utter helplessness their child die a horrible death.  Nothing has changed for DIPG in the last 50 years in standard treatment nor in its terminal prognosis.  DIPG is responsible for most of the pediatric brain tumor deaths each year, the leading cause of death in kids with cancer.”

“We hope that we can count on Representative __________’s consideration and support.  Is there a health legislative assistant I might contact by email?….(take info if given)  Thank you for your time in taking my call; your consideration means a great deal to families of children with brain cancer, and to those who have lost a child to DIPG across the country.”

Other comments you might need, or want:

  • There is a movement across the 50 States to solicit State Proclamations for DIPG Awareness Day, May 17th 2017, due to the partnering activity of the Michael Mosier Defeat DIPG Foundation. Jack’s Angels Foundation currently helping this effort in the California State Legislature.  (Or, explain your personal involvement in your state!)
  • Res.69 was introduced to the House Energy and Commerce Committee on January 30, 2017 by Republican Congressman Steve Knight, (CA-25) with Democrat co-sponsor Congresswoman Jackie Speier (CA-14), co-chair of the Congressional Caucus for Childhood Cancer. (co-sponsors listed below)
  • CONTACT: Adam Brooks, legislative assistant to Congressman Knight at brooks@mail.house.gov.  (202)225-1956;  Molly Fishman, legislative assistant to Congresswoman Jackie Speier, molly.fishman@mail.house.gov, (202)225-4183.
  • DIPG, diffuse intrinsic pontine glioma, is the 2nd most common pediatric brain tumor and is responsible for the majority of pediatric brain tumor deaths each year. Like most childhood cancers, DIPG is marginalized as rare and does not receive adequate government research funding.

Further Directions:

  • You may use this to call any member of Congress, modifying the text for non-Committee members.
  • YOU MAY WRITE A LETTER containing any or all of these details to the Congressional leaders of your choice. From wherever you write, make sure the organization you would like to represent, including some statement of national relevance, is included on the outside of the envelope.  This will help your letter to be seen if you are not writing from the district of the Representative.
  • Getting the email address of the legislative assistant is the next step in actually being able to contact the Representative. These people work continuously for the Representative and are literally their “right arm.”  Respect, warmth, and appreciation go a long way in any communication.  Sometimes not, but it will make your chances of making a difference stronger.
  • Of course, you do not have to follow this script! Download the Resolution from hres69.org so that you are familiar with it and form a better text of your own if you wish!

*Members who have already signed:  14 cosponsors –you can call to thank!! (update coming)

Brownley, Julia [D-CA26] (joined Jan 30, 2017)

Cárdenas, Tony [D-CA29] (joined Jan 30, 2017)

Comstock, Barbara [R-VA10] (joined Jan 30, 2017)

Delaney, John [D-MD6] (joined Jan 30, 2017)

Dingell, Debbie [D-MI12] (joined Jan 30, 2017)

Eshoo, Anna [D-CA18] (joined Jan 30, 2017)

McCaul, Michael [R-TX10] (joined Jan 30, 2017)

Murphy, Tim [R-PA18] (joined Jan 30, 2017)

Soto, Darren [D-FL9] (joined Jan 30, 2017)

Speier, Jackie [D-CA14] (joined Jan 30, 2017)

For updates, visit:  https://www.govtrack.us/congress/bills/115/hres69/details

CONTACT INFORMATION

Members of the House Energy and Commerce Committee & phone#s:  (202)-225-(- – – -)

Republican Members Greg Walden (Oregon – 02) – Chairman(6730)call!
Joe Barton (Texas – 06) – Vice Chairman(2002)call!
Fred Upton (Michigan – 06) (3761)
John Shimkus (Illinois – 15) (5271)
Tim Murphy (Pennsylvania – 18) (2301)*
Michael Burgess (Texas – 26) (7772)
Marsha Blackburn (Tennessee – 07) (2811)
Steve Scalise (Louisiana – 01) (3015)
Robert Latta (Ohio – 05) (6405)
Cathy McMorris Rodgers (WA – 05) (2006)
Gregg Harper (Mississippi – 03) (5031)
Leonard Lance (New Jersey – 07) (5361)
Brett Guthrie (Kentucky – 02) (3501)
Pete Olson (Texas – 22) (5951)
David McKinley (West Virginia – 01) (3801)
Adam Kinzinger (Illinois – 16) (3635)
Morgan Griffith (Virginia – 09) (3861)
Gus Bilirakis (Florida – 12) (5755)
Bill Johnson (Ohio – 06) (5705)
Billy Long (Missouri – 07) (6536)
Larry Bucshon (Indiana – 08) (4636)
Bill Flores (Texas – 17) (6105)
Susan Brooks (Indiana – 05) (2276)
Markwayne Mullin (Oklahoma – 02) (2701)
Richard Hudson (North Carolina – 08) (3715)
Chris Collins (New York – 27) (5265)
Kevin Cramer (North Dakota – 00) (2611)
Tim Walberg (Michigan – 07) (6276)
Mimi Walters (California – 45) (5611)
Ryan Costello (Pennsylvania – 06) (4315)
Buddy Carter (Georgia – 01) (5831)

Democratic Members

Frank Pallone (New Jersey – 06) Ranking Member-call! (4671)
Bobby Rush (Illinois – 01) (4372)
*Anna Eshoo (California – 18) (8104)
Eliot Engel (New York – 16) (2464)
Gene Green (Texas – 29) (1688)
Diana DeGette (Colorado – 01) (4431)
Michael Doyle (Pennsylvania – 14) (2135)
Janice Schakowsky (Illinois – 09) (2111)
G.K. Butterfield (North Carolina – 01) (3101)
Doris Matsui (California – 06) (7163)
Kathy Castor (Florida – 14) (3376)
John Sarbanes (Maryland – 03) (4016)
Jerry McNerney (California – 09)  (1947)
Peter Welch (Vermont – 00) (4115)
Ben Lujan (New Mexico – 03) (6190)
Paul Tonko (New York – 20) (5076)
Yvette Clarke (New York – 09) (6231)
David Loebsack (Iowa – 02) (6576)
Kurt Schrader (Oregon – 05) (5711)
Joseph Kennedy (Massachusetts – 04) (5931)
*Tony Cárdenas (California – 29) (6131)
Raul Ruiz (California – 36) (5330)
Scott Peters (California – 52) (0508)
*Debbie Dingell (Michigan – 12) (4071)

THANK YOU FOR YOUR COLLABORATION IN ADVOCACY!  God bless you and GOOD LUCK!

Sincerely,

Janet Demeter

President, Jack’s Angels Foundation

661-977-3125, 818-400-2724 (txt, cell)

32520 Wagon Wheel Rd.

Agua Dulce, CA 91390

Jacksangels1@gmail.com Main site:  www.jacksangels.org

Advocacy for this Resolution:  www.HRes69.org

Walk/Run to support:  www.CureDIPG.info

 

From 2016

Why do we need HRes586?  Katherine the Brave’s public story of DIPG

Did you know that brain tumors are the leading cause of death in children with cancer, and has been one of the least-funded areas of research?  DIPG is the 2nd most common pediatric brain tumor, and is responsible for roughly 80% pediatric brain tumor deaths annually, with no survivors in decades, literally death-row for kids with cancer.  Simple instructions follow below to send the message for more research funding, the encouragement that people care.    CAUTION:  the video is disturbing, though brief.   Tragically, hundreds watch their child die of DIPG each year in the US.  http://childrencause.org/hres586

  #KatherineTheBrave is struggling to breathe. She sounds awful and we are suctioning her constantly to keep her from suffocating. We are on 24 hour nurse care and we have her in our arms constantly. She yelled at nana this morning to stop kissing her, so she’s still there. (More below ACTION steps)

#Katherine the Brave, continued:  “Last night was hard. She started labored breathing at midnight. Foamy mouth. It’s a bad sign. I remember from my sweet grandmother as she passed of lung cancer. Somewhere in between the suctions, and caressing her tired muscles, I fell asleep. What a slumber. A hard 3 hours. When I woke up she was hot and breathing more heavily than normal. I reached over to touch her and she must have realized I was finally awake, because she leaves over desperately to look at me and her eyes were wide and begging me for help. Her eyes screamed “momma”. I fell apart. This poor child of mine was alone and awake suffering for lord knows how long, and when I woke up she probably thought thank goodness she’s going to save me. I felt like the worst mother. I ran to the kitchen and got every drug she was due for and more and dosed her and calmed her down, called trinity nursing, and held her. Within 10 minutes she was breathing slower and was much cooler. My poor baby. My one goal was to NOT let her suffer and I’ve failed. I will not fail again. I don’t care if I don’t sleep.

I cried all morning. I can’t stop. She’s going. I know it. I’m dying a little each hour as she goes. I know it. We all are.”

#KatherineTheBraveDeservedMoreThanFour
#DIPG  Posted by Katherine The Brave on Sunday, June 5, 2016

20x30moonshot4kids1

Our #Moonshot4Kids and #RunforDIPG campaign raises awareness through running and peaceful demonstration for the urgent need for our children with the deadliest cancers to be prioritized for research funding.  This campaign continues throughout August  and September of 2016 and will continue throughout 2017, until our 100 mi run and 14,000 ft. “Summit” for DIPG!  Check http://runfordipg.org and http://facebook.com/run4DIPG

Support urgently needed pre-clinical research project for DIPG: https://cc-tdi.kindful.com/honor-pages-2015/relay-for-jack 

PAST EVENTS

April 20-24 THE RUN for HRES586:  200 mi in Southern California!  Press Release

Beginning in Bakersfield, ultra-distance runner Everett Smith of Redlands, CA along with amateur runner/activist Janet Demeter take on the 200 mi trek while Demeter begs runners at the beginning and end (N8 Pediatric Brain Tumor Foundation, McKenna Claire Foundation) to participate and help by running any distance in support of HRes586!  Click here to learn more about the run, and the possibility of sharing in this historic, public journey!   The exact START and FINISH will be posted here by April 18, running spots assigned!

 

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