DIPG Advocacy Group Policy in Grassroots Advocacy Work

Legislation AGENDA Fall 2021 (Description follows below)

Primary:  Res. 404, a Resolution.

press summary

Our Letter to Congress with Resolution TEXT

H. Res. 404

The DIPG Awareness Resolution is meant to be a  “door-opener” to facilitate the expedition of urgently needed legislation which is often met with unfortunate resistance and compromise for this vulnerable population of children with cancer.  As such, in H. Res. 404, DIPG acts as a powerful ambassador for childhood cancers and deadly disease, raising awareness to the urgent, unmet needs of our children.  It suggests that federal funding be increased for childhood cancer research, and that pediatric and high-mortality-rate cancers be prioritized for research funding into cures.  And equally important is the designation of May 17th as DIPG Awareness Day, to educate about childhood brain cancer, alert the powers that be to the urgent need for greater childhood cancer research funding, and to attract a cure more quickly for DIPG which is a terrible death sentence.

Here are other crucial pieces of legislation we support, and for which we encourage further conversation with the respective lead advocates:

  1. H. R. 623, The Gabriella Miller Kids First Research Act 2.0, providing funding for the crucial Kids First Research and Data Program at NIH
  2. H. R. 2210, The Fairness to Kids with Cancer Act of 2021–increases NIH/NCI funding for childhood cancer research by setting a standard with census data.
  3. H. R. 5377 The Cancer Patient Equity Act of 2021 ensures equality for cancer patients to receive molecular diagnostics and targeted therapies, through Medicare, Medicaid, and CHIP.

Awareness Campaign Agenda for H. Res. 404 and legislation for childhood cancer/disease.

DIPG Advocacy Group is not a legally incorporated entity, but a coalition or alliance (unofficial corporate body) of childhood cancer organizations and individual advocates supporting the National DIPG Awareness Resolution, which has had 3 Senate and 4 House of Representatives introductions on its pathway to success.  It is not a law to be signed or a measure which authorizes funding; it has no lobby organizations or stakeholder corporations supporting its issue.  It is a completely citizen-supported and originating resolution, written by lawmakers with parents to illuminate a long-lived tragedy in our society which has been obscured for decades, in part by public narratives about childhood cancer dominated by corporate interests.

Re: founding organizations, Jack’s Angels (Agua Dulce, CA) and Julia Barbara Foundation (Knoxville, TN)

Jack’s Angels and Julia Barbara Foundation are 501(c)3 charitable organizations actively supporting the success of the DIPG Awareness Resolution in the House and the Senate.  As such, they do not officially support authorizing legislation in the political arena.  DIPG Advocacy Group, however, may include other measures which support children with cancer and childhood cancer research in its advocacy efforts, and in its meetings with Congressional Staff and Members of Congress.

Why lead with the resolution?  

The DIPG Awareness Resolution originated with DIPG parents to help the childhood cancer awareness movement, and is a measure supporting the People’s interests only, specifically to give greater public visibility to DIPG and childhood brain cancer, the leading cause of cancer-related deaths in children in the United States.  It has no other support for its success, whereas other measures we unofficially support through DIPG Advocacy Group may have other parties working toward and investing in the success of those measures.  We and other parents are the only driving force behind progress for the DIPG Awareness Resolution and the recognition of its message; for this reason the purpose of our Congressional office meetings is to educate about childhood brain cancer and ask for support for H. Res. 404. The other measures are secondary but no less important to the discussion as ‘asks’, listed above.

Each measure supported has its own unique place of importance in the childhood cancer narrative and, in our advocacy efforts, we aspire to be inclusive, collaborative and equanimous.  To this end we continue engaging in creative imagination and conversation for future measures to solve problems in the domain of childhood cancer research and treatment, and those discussions and designs are ongoing.