June 29 update: 127 cosponsors! on the way to 218
Check out our INTERACTIVE MAP to see if your Representative is signed on to support the DIPG Awareness Resolution!
JOIN US in Virtual Meetings on Capitol Hill by Teleconference!
What is an “SOS”?
This is a letter to your Representative (brief or long) which we use to help advocate for you or if we advocate together, and also so that we know more about you and your story. In this format, which we call the S.O.S “Statement Of Support”, include 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, or with you.
- It should be signed with your name and address, and if possible, a contact phone number. This can be emailed to us to advocate with you or for you, and sent to your Representative on their website, if you wish to take that extra step (more exposure to the information is always best).
Lend Your Voice to end obscurity for DIPG and pediatric brain cancer for JULY Virtual Meetings, and District meetings for August.
- Our letter to Congress: includes H. Res. 114 text, endorsements, Joint Statement of Experts
30 Days until Congress Summer Recess
- Virtual Appointments through July with Capitol Hill week of concentrated appointments: *July 20-24, with Registration, please submit an SOS, statement of support, with a picture of your child, if applicable.
- *Founders group Washington DC July 20-24 (tentatively scheduled in-person meetings, and virtual meetings scheduled)
- Continuing District appointments through August.
- Advocacy Week Sept. 21-25, and #Moonshot4Kids “Rally for the Angels and Our Children” 12-3pm 9/25 at the U.S. Capitol!
Use our interactive map to see if your Representative is signed on.
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 a few exceptions) for lawmakers websites is: lastname.house.gov. All office phone numbers can be found there as well, district offices and Washington DC offices.
…once you find your Rep, use our interactive map, or 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 your Representative is NOT signed on, go to #3 :
Write, Call, and Email or…
Visit the Children’s Cancer Cause portal to support H. Res. 114 with one easy step! They have a letter already written to which you may add or send as-is.
To call or write yourself:
“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 an email portal on their website; most of the time, only constituents can do this by entering an address.
- 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
Next Phase: Get to 218 #HouseVote
- Letter to House Leadership; view in post
- H. Res. 114 needs 218 votes to pass! 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 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.
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
Katherine Bader 573-826-7491 (MO, Group Secretary)