October Letter to Congress

Link to pdf includes endorsements page and resolution text

Seeking Member Support for the Recognition of Children Fighting Brain Cancer:

H. Res. 404, The National DIPG Awareness Resolution

Oct. 1, 2021

To the Honorable Members of the United States House of Representatives, and Staff:

Thank you for considering this otherwise obscured population and issue amid other pressing matters on Capitol Hill today.  The DIPG Awareness Resolution was first introduced in 2016 to draw attention to the urgent, unmet needs of children with brain cancer, the leading cause of cancer-related childhood mortality in the United States.. The devastation of DIPG, diffuse intrinsic pontine glioma, is a powerful example of what our children and their families are expected to endure amid a medical research investment culture which does not prioritize children or the dying.  Cancer is the #1 cause of disease-related childhood mortality in the United States, yet childhood cancer in general remains poorly funded for research into cures.  

As such, DIPG Advocacy Group is committed to achieving Congressional recognition for DIPG, one of the most merciless and indefatigable killers of American children, as an ambassador for childhood cancer.  Here are a few lesser-known childhood brain cancer facts which are crucial to stronger national attention and support for childhood cancer research:

1. Brain tumors are the leading cause of cancer-related deaths in children; DIPG is the 2nd most common, not rare, brain tumor in children, and is responsible for the majority of pediatric brain tumor deaths annually. This alone represents a significant portion of the annual childhood cancer death toll.  DIPG may be a rare disease, but not a rare childhood cancer.

2. The standard treatment protocol for DIPG is the same today as when Neil Armstrong’s daughter died of it in 1962.

3. DIPG is just one of a myriad of deadly childhood cancers without viable solutions, underfunded for research into cures.  Parents routinely discover there are no solutions for their children because they aren’t considered an “adequate investment incentive’.  Medical research investment for children is one area where our priorities as Americans are completely upside-down.

Why DIPG?  We need a concrete example to dispel the current narratives which sugar-coat the idea of childhood cancer to the general public.  The horrific nature of the experience of DIPG and the multitude of deaths which continue out of sight, and out of mind, are a gut-wrenching national tragedy largely neglected.  This is truly a voiceless population.  The families are most often too devastated to speak out, much less conceive of hopeful advocacy; we are asking for your help.  This issue affects every state and district.  You are our closest representation in our federal government; we need your help to give these children and their families a voice, and to help make our children with cancer a national priority.

With 215 signatures recorded last session in support of the DIPG Awareness Resolution, the awareness day* was retained in its language as brain cancer is largely an unseen, unknown prolific killer of children.  We cannot attract a cure quickly enough.  We are confident that lives could be saved immediately with greater public awareness of the signs and symptoms.  Increasing awareness and education about childhood brain cancer will help dispel the resistance from insurance companies to approving the definitive diagnostic tool (MRI), support research into cures, and facilitate access to knowledge of possible experimental treatments for families of the newly diagnosed when a matter of days, even hours, can mean life or death.

We hope that you will join Congresswoman Dingell (D-MI-12), Congressman Joyce (R-OH-14) and the growing number of cosponsors of H. Res. 404 in recognizing the importance of children fighting this horrific death sentence in America and around the World.  The public awareness generated by the ultimate recognition of the House of Representatives* will help save lives and set an important precedent for leadership in caring for our children as a society. 

Please contact Timothy Huebner with Congresswoman Dingell’s office for more information, and to support with your signature: Timothy.Huebner@mail.house.gov, 202-225-4071.  On the Republican side, contact Burke Smith with David Joyce’s (OH-14) office at burke.smith@mail.house.gov. Thank you for your kind consideration.  

Respectfully yours, 

DIPG Advocacy Group

Janet Demeter, Organizer; President, Jack’s Angels, Agua Dulce, CA 

Katherine Bader, Director of Community Relations, Rhineland, MO

Elizabeth Psar, co-Founder; President, Julia Barbara Foundation, Knoxville, TN 

Paul Miller, co-Founder, Childhood Cancer Advocate, Littleton, CO 

*exception clause on protocol restricting commemorative resolutions