Advocate With US

At the close of the last session of Congress, the DIPG Awareness Resolution gained almost a majority of signatures–215–which is unprecedented for a resolution of this kind for childhood disease. Our goal is to gain a clear majority which would ensure that the resolution, after 6 1/2 years, four introductions and nearly 2600 more children lost to DIPG, will finally be given consideration for scheduling for a House Vote!

#Moonshot4Kids (H. Res. 404) 4 ways to advocate!

1.Quickest and easiest: send a pre-written letter of support from the magic portal at the Children’s Cancer Cause Action page, to your Rep in Congress! (you can add to it, edit with your own info, etc) Please share this action alert in your social media circles 🙂 To see a pdf copy of a sample letter, click HERE

2. Write an email from your Representative’s website (as only constituents can). To find the site, type in your zip code here; at the bottom of the page that follows your entry, there will be a link to your Representatives website. Normally the address will be lastname.house.gov, but not for all of them.

Visit govtrack.us to see if your Rep is on the list of current cosponsors

3. The most powerful: For families and concerned citizens wishing to lend their voices: to help us make the case in our meetings with Congressional staff, write a statement of support and send it to us at moonshot4kids@gmail.com which we can share with your Representative’s office and staff. Include your return address like a regular letter for proof of constituency, and please include a picture of your family, your child if applicable. Examples of statements of support are below under, “for your advocacy needs.”

4. For the mighty: Be an Instigator! Help us share these options on social media, encourage/organize others in your state or region to help. Contact us at dipgadvocacy@gmail.com More tips, context, background, pertinent documents and ideas for support are below.

Whether or not we succeed, our mission is to educate and alert all 435 offices of the House of Representatives about DIPG, pediatric brain tumors, the leading cause of cancer-related deaths in children, and to the fact that children with cancer have been chronically underserved by the corporate investment culture which dominates medical research in our country today.

What is H. Res. 404 and what does it do?

The National DIPG Awareness Resolution: Our letter to Congress with resolution text

Press Summary gives a description for the public and a brief history of the Resolution.

  1. Alerts Congress and the American Public to the underfunding of the childhood cancer research space using the powerful example of DIPG, the 2nd most common brain tumor in children and the deadliest. DIPG is responsible on its own for the majority of childhood brain cancer deaths annually, representing a significant portion of the annual childhood cancer death toll. Yet outcomes have not changed for these kids since Neil Armstrong’s daughter Karen died of DIPG in 1962.
  2. Suggests that pediatric and high risk cancers have elevated consideration in the research grant process with our taxpayer dollars. In other words, it asks that we prioritize children and the dying for research into cures.
  3. Designates May 17th as National DIPG Awareness Day, to:

  • attract a cure for this killer more quickly,
  • alert the powers-that-be to the urgent, unmet needs of children with cancer and deadly disease,
  • educate clinicians, caregivers and parents to the signs and symptoms of brain tumors to save lives right away,
  • dispel resistance from insurance companies to using the definitive diagnostic tool, the MRI;
  • ensure more information would be shared at regarding the most promising treatments when a matter of days can mean life or death,
  • recognize the tens of thousands of children who have bravely died of DIPG in obscurity for decades, and their devastated families.

Why do we need to inform all 435?

In our quest for 290, we do the work of educating as many of the 435 offices as we can about the realities of DIPG/childhood brain cancer and the urgent need for more support for childhood cancer/disease research.

Realistically, not all will sign-on to the resolution, but our aim is high: to get a supermajority (290) in the House of Representatives during this session of Congress. Last session saw 215 so we’re close. This would ensure that, at the very least, House Leadership would recognize the need for it and its exceptional nature, and allow a vote for it. In reality House Leadership should recognize a simple majority, as its unprecedented for this type of resolution.

How do I help?

–> We need folks from as many districts as possible to chime in and SUBMIT YOUR SUPPORT HERE

ADVOCATE ON YOUR OWN, ALSO!

…you can also 1. type a letter in your Reps email portal on their website, 2. call their DC or district office, field office, or all of the above. Directions are lower on the page. Statement of Support (SOS) instructions are here on this page so please contact us with any questions!

FIND YOUR REPRESENTATIVES HERE: https://www.govtrack.us/congress/members

In your message, let your Rep know that A, you want them to co-sponsor the DIPG Awareness Resolution for childhood brain cancer, B, that Debbie Dingell (MI-12) is the lead sponsor for contact. THANK THEM for honoring your request as their constituent.

For your advocacy needs

Download the sample scripts and written messages which can be sent from anywhere in the USA to their Reps in Congress, or phoned in, with the simple “ask” of, “please cosponsor the DIPG Awareness Resolution, H. Res. 404…” Our goal is to get a House Vote before November 2022, and for that we need a solid majority of the Members of the House to sign on. We’re very close.

When our group makes Congressional office appointments,

It’s important to have information about constituents–even if we have only your name and address, and a desire to help. Although our federal lawmakers make decisions for us all, in considering a resolution of this kind it’s important for them to have constituent support, from State and district. Along with asking for a statement of support from those willing to give it, we share tools that are easy for anyone to use on their own to advocate for this important resolution for children with DIPG, and recognition for all children fighting cancer and other deadly disease.

  • Letter to Congress (includes endorsements and Resolution text)
  • Endorsements
  • Press Summary
  • Sample Script for writing/calling your Rep in Congress –but honestly, use any portion or language of our Letter to Congress. It can give good context also for a letter of any length you would like to write. Your authentic thoughts and words, simple and to the point with the simple ask of having your Rep cosponsor, are best!

In your message, let your Rep know that A, you want them to co-sponsor the DIPG Awareness Resolution for childhood brain cancer, B, that Debbie Dingell (MI-12) is the lead sponsor for contact.

Although we will have more detailed advocacy instructions for the House Resolution in the weeks and months to come, if you would like to ask your Rep to support it now simply enter your zip code on this linked page and your Reps will be presented to you, with links to their websites and contact information.

Please consider thanking those who have signed-on to date: list on govtrack.us // list on congress.gov

Use the hashtag #moonshot4kids and thank them on Twitter! The Twenty-Two Originals:

Cosponsor
Date Cosponsored
Rep. Joyce, David P. [R-OH-14]*
05/17/2021
Rep. Butterfield, G. K. [D-NC-1]*
05/17/2021
Rep. Cleaver, Emanuel [D-MO-5]*
05/17/2021
Rep. Speier, Jackie [D-CA-14]*
05/17/2021
Rep. Blumenauer, Earl [D-OR-3]*
05/17/2021
Rep. Cohen, Steve [D-TN-9]*
05/17/2021
Rep. Williams, Nikema [D-GA-5]*
05/17/2021
Rep. Levin, Andy [D-MI-9]*
05/17/2021
Rep. Dean, Madeleine [D-PA-4]*
05/17/2021
Rep. Deutch, Theodore E. [D-FL-22]*
05/17/2021
Rep. Pingree, Chellie [D-ME-1]*
05/17/2021
Rep. LaMalfa, Doug [R-CA-1]*
05/17/2021
Rep. Salazar, Maria Elvira [R-FL-27]*
05/17/2021
Rep. Connolly, Gerald E. [D-VA-11]*
05/17/2021
Rep. Vela, Filemon [D-TX-34]*
05/17/2021
Rep. Rutherford, John H. [R-FL-4]*
05/17/2021
Rep. Walorski, Jackie [R-IN-2]*
05/17/2021
Rep. Lamb, Conor [D-PA-17]*
05/17/2021
Rep. Rush, Bobby L. [D-IL-1]*
05/17/2021
Rep. Long, Billy [R-MO-7]*
05/17/2021
Rep. Waltz, Michael [R-FL-6]*
05/17/2021

Interactive Map Updates on the DIPG Map Page for our childhood brain cancer community! Thank you to our awesome Community Outreach Director Katherine Bader!

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

Katherine Bader 970-308-5555 Community Relations

Bonnie Woodworth 813-545-0649 -social media

LETTER TO COMMUNITY WITH CURRENT ADVOCACY STRATEGY, SUMMER 2021 THROUGH WINTER 2021.

RALLY ON!