Lend Your Voice to end obscurity for DIPG and pediatric brain cancer.
REGISTER HERE with DIPG Advocacy Group
March 10 update: 101 cosponsors! 117 to go for automatic vote; help us get there: Directions
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.
Quick way–>Visit the ACTION CENTER at Children’s Cancer Cause! There you can submit a form letter to which you can add if you wish, or send as is, automatically by entering your zip code, to your Representative!
“I don’t know what to say or write..” USE THIS:
“Please help attach hope to pediatric brain cancer, the leading cause of death in children with cancer. Kids fighting DIPG and other deadly brain tumors need to know we’ve got their back! Please cosponsor H. Res. 114 in honor of (name) and so many others like him across the country who are fighting for their lives, and those who have lost their fight in obscurity. These kids deserve more from us…but how can we unless people are aware? We need your help; thank you for honoring my request as your constituent.” SAMPLE SOS for Warriors and Angels
Supportive and informational documents can be found below the Action Steps.
…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.
…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 :
Write, Call, and Email.
Be aware of, and familiar with, our letter to Congress–which you may use!–the Resolution, and supportive documents. They can be found below the set of directions on this page. You may use our group to help you; look for instructions below to email your information to us.
- 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.
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.”
- 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
- 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.
- Supportive statements from the 2-13-2020 Congressional Briefing
- introductory letter and supporting documents to members of the House of Representatives to accompany your request.
- Joint Statement of Experts attesting to the importance of the Resolution, and also:
- Support letter from the Alliance for Childhood Cancer which can be included.
- 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”
DIPG Advocacy Group can do the work for you if you prefer—
–no problem! Email firstname.lastname@example.org and include your name, address to prove constituency, contact info, etc, and any other info relevant to your request. Directions
Coming in April: Rally House Leadership
- Information and instructions will be available here Monday 4/06/2020
- H. Res. 114 needs 218 votes to pass, OR a “Suspension of Rules” House Vote for which it qualifies under Protocol 7, Rule 28. Ask your Rep to support a #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 101 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.
DIPG Advocacy Group Contacts:
- Jill Morin 303-907-7612 (CO) -group secretary
- Bonnie Woodworth 813-545-0649 -social media
- Lisa Ward (KS, US mid-west) 620-669-7811 -treatment options network
- 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) -Guiding Angels Prods.
Letters to VIPs in the House: Wait until campaign launch. These will be updated by March 30th, 2020.
- House Leadership: Speaker Pelosi, Majority and Minority Leaders, and Whips (coming March 2)
- California Reps (the bill originated in California–they should be on board! Californians feel free to use this.)
- House Energy and Commerce Committee and Subcommittee on Health This committee basically controls what happens to H. Res. 114.