435 or bust!

DIPG Advocacy Group, “435 or Bust!”

Our goal this session of Congress (117th Congress) is to gain a supermajority (290) of signatures for the DIPG Awareness Resolution so that it will finally get a House vote.  Even if we get a simple majority, it will still set a precedent of support for this kind of House Resolution for our children.  And so, as long as we educate all as many offices as possible about DIPG, childhood brain cancer, and the urgent need for more support for our kids, we win.  We need to alert community members in all 435 to help H. Res. 404; your help is deeply appreciated! 

What is a Statement of Support, “SOS”?

Examples of Statements of Support

An “SOS” is a brief letter (½ to 2p.) with return address ato prove constituency, to your Members of Congress and staff, expressing support for the National DIPG Awareness Resolution (H. Res. 404), and sharing a personal story if desired.   Any US resident can advocate like this, whether you are a family member of an afflicted child, friend, or concerned citizen. You may opt for the generic letter or submit your own which is better.  For our purposes, the SOS must include the ‘ask’, “please cosponsor (sign in support) the DIPG Awareness Resolution.”  Please submit your SOS to us at [email protected], after submitting your information here.

(submit SOS and picture to [email protected])

We can share a generic statement on your behalf, also.  This option would look something like this:

Sample generic…you may use this one also and simply insert your story…

To Representative ______,

The DIPG Awareness Resolution (H. Res. 404) elevates the profile of DIPG, childhood brain cancer, and the chronic neglect of the childhood cancer space by the current medical research investment culture.  The resolution suggests that pediatric and high risk cancers have greater consideration for research funding from public and private sources.  It also designates a day in May for DIPG/childhood brain cancer, as we cannot attract a cure quickly enough, and there is inadequate public awareness of the prevalence and deadly nature of childhood brain cancer.  Please cosponsor this resolution to help us attract support and develop helpful therapies more quickly.

Brain tumors are the leading cause of cancer-related death in children, and DIPG, diffuse intrinsic pontine glioma, is the 2nd most common brain tumor and the deadliest.  It’s responsible for the majority of childhood brain tumor deaths annually, yet there’s been no change in the standard treatment protocol since Neil Armstrong’s daughter Karen died of it in 1962.

With the technology of the day, we sent men to the moon in the 1960s and brought them home safely because we had strong national resolve.  Today, we have the technology, and willing, brilliant researchers to develop treatment but lack the national awareness of the urgent, unmet needs of children with DIPG/brain cancer.  The deaths these children endure are merciless and relentless; this is truly a voiceless population.  Most families are too devastated to even conceive of hopeful advocacy, after witnessing their child’s death in helplessness because, “the numbers aren’t great enough for investors” in the wealthiest country in the world.  Please sign this resolution and help bring urgently needed attention to these children.  This is a truly voiceless population, and we need your help!

Thank you for honoring my request as your constituent.

Sincerely yours,

Firstname Lastname

12345 Beautiful Rd

Goodtown, GreatState

98765-1122 USA


DIPG Advocacy Group Letter to Congress

(includes 9/2021 letter, endorsements, resolution text)

H. Res. 404 Summary for the Press

(general description and brief history of H. Res. 404)

Examples of Statements of Support

–> For parents to hear that there are no life-saving options for their child because they don’t represent an adequate investment incentive is unacceptable and immoral in the wealthiest country in the world boasting the greatest technological prowess.