Guest Post: Why DIPG Needs an Awareness Week

About the Author: Janet Demeter is the founder and CEO of Jack's Angels Foundation based in Santa Clarita, California. Janet's three-year-old son Jack was diagnosed with DIPG in October 2011 and passed away in July 2012. Jack's legacy lives on through Janet's tireless work as a vocal advocate in the fight against this devastating disease. Janet recently secured the introduction of a House Resolution (H.Res.586) that would designate the fourth week in May as DIPG Awareness Week.

By calling attention to one type of childhood cancer, we aim to elevate the profile of all childhood cancers.
— Janet Demeter

Pediatric cancer is the leading cause of disease-related death in children in the United States, and brain tumors, including DIPG, are the deadliest of all. Diffuse intrinsic pontine glioma - or as I call it "Cancer's Death Row for Children" - has seen no change in prognosis since Neil Armstrong's daughter died of it in 1962. 

The experience we had with our son Jack was so horrific, not just in the terminal diagnosis but for the obvious lack of research activity for these children. Families regularly hear that there is nothing to save their child, because the numbers aren't great enough for investors. DIPG mostly affects young children between 5 and 10 years old, with 200-400 diagnosed every year in the U.S. These kids remain fully aware of their demise until respiration is affected and death ensues.

How many children have to die in such an excruciating way before the medical research system deems their lives worth saving?

DIPG - with its staggeringly grim odds - is nothing new. But with growing awareness through social media, parents are learning that DIPG is not so rare as excuses attempt to justify. We are banding together as advocates and refusing to feel powerless any longer. 

H.Res.586 - Chad and Jack's DIPG Resolution (named for my son Jack and also Chad Carr of Ann Arbor, MI) - designates the 4th week of May as National DIPG Awareness Week in honor of the thousands of little heroes who have bravely faced death without fanfare throughout the decades and for those who are currently fighting with courage on Cancer's Death Row. H.Res.586 was introduced in January by Congressman Steve Knight (CA-25) and calls for elevated consideration for low-survival-rate cancers and years-of-life-lost in the research grant process with the NCI.

H.Res.586 is the first legislation to directly recognize DIPG, but our goal is to raise awareness for all the hundreds of types and sub-types of pediatric cancer. By calling attention to one type of childhood cancer, we aim to elevate the profile of all childhood cancers. Childhood cancer as a whole is marginalized and neglected by the medical research system, and DIPG serves as a particularly devastating example. By shining a light on DIPG, we hope to brighten the path for all kids with cancer -- kids who deserve more awareness and much more support.

Our goal is to pass this legislation in time to coincide with this May's Brain Tumor Awareness Month. As a non-controversial resolution, it only requires passage by one chamber of Congress.

Here are a few ways you can help us advance this bill:

  • WRITE CONGRESS:  The Children's Cause has created a simple action alert form for you to write to your Representative about this bill. Please take a moment to send this important and urgent alert, and then share it with your friends and family.
  • VIRTUAL ACTION DAY, APRIL 20: Join us on Wednesday, April 20th for a virtual Action Day. Learn more, or join the Facebook Event.
  • RUN FOR H.RES.586: This 200-mile run taking place in Southern California April 20-24 will feature ultra-distance runners showing their support for this cause. Learn more, and listen in on April 21 to Childhood Cancer Talk Radio to hear from some of the runner/activists involved! 
  • RELAY FOR JACK!: The main fundraiser of the year for Jack's Angels is taking place May 28th in Agua Dulce. This race will race funds to support a specific research project for DIPG at the Children's Cancer Therapy Development Institute. Learn more about this run and this project, called "Jack's 12 Pebbles."

- Janet Demeter, CEO of Jack's Angels Foundation

Jessica Kean