Memo: Advocacy
Advocacy for Children with Cancer
and Deadly Rare Disease
any Us citizen can help advocate for this bill
Any world citizen may use our work as Precedent and example
for Awareness in any country! #strongertogether
#Moonshot4Kids
Introduced in the 116th Congress Feb. 8, 2019 by:
Congresswoman Jackie Speier (D-CA-14) and Congressman David Joyce (R-OH-14) in the House of Representatives
To Be Introduced by Senators Marco Rubio (R-FL) and Jack Reed (D-RI) in the Senate in May 2020.
(The Senate passed the 2019 version as S. Res. 223)
The DIPG Awareness Resolution
What is it, and what's it about?
Here's a quick summary on this link.
The DIPG Awareness Resolution unapologetically asks that pediatric and high-risk cancers receive greater consideration for research funding both with our government funds and private sector sources. Historically, these factors have not been involved in the decision-making process for research grants; this is in fact a plea for greater transparency.
It also designates May 17 as DIPG Awareness Day, as 31 states had this day so declared in 2018, 32 in 2019.
It raises awareness to the deadly statistics of DIPG, pediatric brain cancer,
and the urgent need for greater research funding into pediatric cancer in general.
DIPG Advocacy Group Letter to Congress
You can use this to support your request to your Reps in Congress to sign the Resolution.
Packet includes:
1. Letter to Congress 2. Resolution Text, 3. endorsements
TOOLS - USE THEM
Alliance for Childhood Cancer
1. identify as a constituent
Name, address, contact info
2. brief statement of support
3. The Ask:
"Respectfully, please co-sponsor
H. Res. 114; thank you"
As concerned citizen or family member; share brief story from 1paragraph to however long
Remember...
-->THE RESOLUTION asks, for any given type of cancer, that years of life lost and mortality rate
be given greater consideration in the research grant process, with public and private funding sources.
Currently, numbers and profits, or corporate interests, dominate the decision-making process;
parents discover there are no solutions for their children because
their "numbers" don't warrant the research investment--their lives don't matter, essentially.
FINALLY!
A NATIONAL CONVERSATION
ABOUT KIDS WITH CANCER GETTING LEFT BEHIND FOR RESEARCH INTO CURES!
...and meaningful collaboration toward solutions...
IMPORTANT:
32 States, in 2019, had a DIPG Awareness Resolution for
May 17 Awareness Day!
Right now, it's parents and parent-led foundations raising basically almost all the funds for this research.
The Awareness Day will help let the world community know where funding is so desperately needed to save lives.