Advocate With US

Lend Your Voice to end obscurity for DIPG and pediatric brain cancer.

Send A Message of Support for Pediatric Brain Cancer Awareness To Your Reps in Congress!

May 15 update: 114 cosponsors! on the way to 218

Interactive Map–coming soon! To find your Representative, and to see if he or she is a cosponsor of H. Res. 114, or not. For now, follow this link and click “show” after cosponsors to see the list. It’s easy to use these for support:

Our Group’s 60-Day Push to Summer Recess: May 28 – July 30

  • Virtual Appointments of Capitol Hill will be ongoing, with:
  • Advocacy Week of appointments June 22-25 (team plans meetings in concentration throughout this week)
  • Admin meeting with Speaker of the House, schedule tba.

You have options:

  • Simply ask your Rep in an email on their website to cosponsor the Resolution, or call their office, using the steps below to find out their status–if they have already signed on or not.
  • You may help with your state or region with other advocates in our scheduling of zoom appointments with Congressional Offices.
  • Participate with our twitter team! moonshot4kids@gmail.com

Action Steps:

First,

COMING SOONinteractive map: if you don’t know who your Representative is, or which district you’re in, visit https://www.house.gov/representatives/find-your-representative and punch in your zip code. There should be a link to your Reps website when you search, but the standard address (with exceptions) is lastname.house.gov. All office phone numbers can be found there.

Second,

…once you find your Rep, search HRES114 at congress.gov and click the number after “cosponsors” to see the list of cosponsors and if your Rep is among them. If yes, CALL TO THANK THEM! If not, go to #3 :

Third,

Write, Call, and Email.

“I don’t know what to say or write..” Example here

Be aware of, and familiar with, our letter to Congress–which you may use!–the Resolution, and supportive documents below the set of directions on this page. You may REGISTER HERE with DIPG Advocacy Group if you would like our help!

  • It’s easy to write to your Representative in a form email on their website; most of the time, only constituents can do this by entering an address.

What is an “SOS”?

Include in your note, which we call the S.O.S “Statement Of Support”, the all-important “ASK”: “ please support and cosponsor H. Res. 114, and help bring much needed awareness to DIPG, pediatric brain cancer, and the urgent need for greater research attention for pediatric cancer. –your story, or further thoughts– Thank you for honoring my request as your constituent.” An SOS is a formal statement–as brief, or as long as you want. It should include your feelings about the importance of DIPG/pediatric brain cancer awareness as a concerned citizen, friend, family member, or patient. Include a picture (optional) in the event you are sending the SOS to DIPG Advocacy Group to advocate on your behalf. It should be signed with your name and address, and if possible, a contact phone number. This can be emailed to us to advocate for you, and/or, sent to your Representative on their website.

  • CALL! You may also call your Reps DC office and basically say the same thing as in your form email, to the staff. sample script
  • One step further is to ask to email appropriate staff further information, like your child’s picture and your letter, if applicable, and/or DIPG Advocacy Groups letter to Congress with supporting docs, shared below. Ask for the staffers name and email address.
  • If you’re really committed, please call the District Office near you, and make an appointment to meet your Representative to share your story, and our letter to Congress and other supporting docs. There’s a very high probability that if you meet the Rep face-to-face they will sign on.
  • SHARE JACE’S VIDEO with this link: bit.ly/moonshot4kids-Jace

Remember:

  • Always include The “ASK”: “Please support and cosponsor H. Res. 114, the DIPG Awareness Resolution. ” Any US citizen/resident may do this. If your family or friends are directly affected, briefly share your story.
  • Backing up what you do with a snail-mail letter is a good choice. Again, if you wish you may include our letter and support documents with your snail mail letter; simply download and print, or email the health legislative staff from your phone call by asking to whom you may write by email.

H. Res. 114 suggests that the years of life lost, and mortality rates associated with a given type of cancer be prioritized in the decision-making process for research grants with our government funds and private sector funds. It doesn’t dictate process; it suggests this as an important part of the solution to the problem of inadequate funding to save our kids lives. They deserve more of a fight from us. The Resolution text cites the numbers. Be aware of its contents for maximum effectiveness in your advocacy. Familiarize yourself also with it’s main purpose and history in this brief summary.

  1. Supportive statements from the 2-13-2020 Congressional Briefing
  2. introductory letter and supporting documents to members of the House of Representatives to accompany your request.
  3. Joint Statement of Experts attesting to the importance of the Resolution, and also:
  4. Support letter from the Alliance for Childhood Cancer which can be included.
  5. For your consideration and reference, the Synopsis of the #Moonshot4Kids Congressional Briefing, “DIPG, Pediatric Brain Cancer, and the Importance of H. Res. 114”

Synopsis of Briefing: “DIPG, Pediatric Brain Cancer, and the Importance of H. Res. 114”

Directions flyer

DIPG Advocacy Group can do the work for you if you prefer

–no problem! Email moonshot4kids@gmail.com and include your name, address to prove constituency, contact info, etc, and any other info relevant to your request. Directions

click pic to see details

Next Phase: Get to 218 #HouseVote

The Goal: Right now we need as many voices as possible across the country asking for the Resolution to pass; there are 435 Districts, and we have 114 signed on.

DIPG as Ambassador to Congress and the Public for Childhood Cancer

The Public needs powerful examples attain sufficient awareness to ensure accountability from Congress. If we want childhood cancer legislation like STAR and RACE to truly be supported, to have their respective allocations approved, to build upon and allow greater development and support for pediatric research, the Public must be aware–this is paramount to accountability.

“They can’t care if they’re not aware,” said Aimee Dickey, forever 12, over a decade ago… DIPG, in all of its horror, makes a very strong case for pediatric cancer. Use it.

“…To this day it is not unusual for parents to hear that there are no solutions for their child with DIPG because, ‘the numbers aren’t great enough for investors,’ in the wealthiest country in the world boasting the greatest technologies. DIPG children walk bravely toward their death as their bodies decline, in full awareness of what is happening to them in most cases, as their parents must witness this in utter helplessness…”

Click link below for our facebook group page.

Visit our FACEBOOK Page and share in our weekly conferences for more information!

DIPG Advocacy Group Contacts:

  • Janet Demeter 818-400-2724 (CA) organizer, co-founder
    Elizabeth Psar 865-765-9655 (TN, US Southeast) co-founder
    Paul Miller 720-989-5047 (Colorado, US West) -co-founder
  • Bonnie Woodworth 813-545-0649 -social media
  • Lisa Ward (KS, US mid-west) 620-669-7811 -treatment options network

RALLY ON!