On Day 23 of Brain Tumor Awareness Month in 2018, it seemed apropos to share this appeal:
The Honorable Donald J. Trump
President of the United States
The White House
Office of Proclamations
1600 Pennsylvania Avenue NW
Washington, DC 20500
Dear President Trump,
On behalf of the DIPG Advocacy Group, an association of parents, foundations, and concerned citizen advocates for children with cancer, I humbly write to you today to request your assistance in raising awareness to DIPG, diffuse intrinsic pontine glioma, one of the worst killers of our children today in the United States and around the world. We are requesting the date in May, Brain Tumor Awareness Month, to be the 17th day, as this date has been established already in 31 States in 2018.
Brain Cancer is important in the childhood cancer community as it is the leading cause of death in children with cancer, and DIPG is responsible for the majority of those deaths in children each year, yet despite the tragic deaths, no change has been made in standard treatment nor its terminal prognosis in over 50 years. Neil Armstrong’s daughter died of it in 1962, yet we use the same means to treat today; radiation, and palliative care, and the note to “go make memories” before the child dies. The average survival time post-diagnosis, with treatment, is nine months.
One of the difficulties we have in the childhood cancer community today is raising sufficient awareness to the fact that all exclusively pediatric cancers are marginalized as rare and receive inadequate, if any, research funding. DIPG is the 2nd most common pediatric brain cancer, yet if you ever see it in the headlines, it is described in bold print as a “very rare pediatric brain cancer” even though it’s one of the most common. It has become habit in our medical research system and the media which must report on it that these are tragic but incidentally insignificant occurrences unworthy of research investment. In fact, this is commonly heard by DIPG families, at diagnosis and thereafter when we ask questions as to why so little has been done to save these kids in over 50 years; the answer is, invariably, “the numbers aren’t great enough for investors.”
Mr. President, in the most technologically advanced country in the world, and also one of the wealthiest countries in the world, in a country where we pride ourselves for our conservative family values–that our children come first and they are the future–to allow this to continue in full awareness is arguably unconscionable, and quite frankly, it’s an embarrassment. It’s also a disservice to the incredibly gifted scientists who are dedicated to researching causes, conditions, and cures for this disease, to not adequately fund their work which may indeed lead to a cure for all cancer. We are hoping that your heart is reachable when our Congressional leaders are slow to represent us in our most urgent need.
DIPG, diffuse intrinsic pontine glioma, is diffusely infiltrating to the pons area of the brainstem and is inoperable. It has a less than 1% survival rate and most die within a year of diagnosis with treatment. Roughly 350 are diagnosed in our country each year, and incidence is regular and on the rise. No parent should hear that their child’s life has no value to our medical research system, but unfortunately that is a reality to be endured by all of us as we watch our children die in total and complete helplessness. These children walk bravely toward their death while retaining their cognitive function as their bodies decline until respiration ceases. This represents a human tragedy and suffering shared by other childhood cancer families to which our government and industry has turned a blind eye. Whole communities are affected when a child is so afflicted; the emotionally devastated cannot be counted.
While the national DIPG Awareness Resolution (H.Res.69) has been in Congress since January of 2016, another 850 children, roughly, have died of DIPG in the U.S.A. while the Energy and Commerce Committee has sidelined it. We are making efforts with the Senate, which seems more auspicious, but with all the earnestness at our command we are turning to you, with the powers you have as President of our Great Country, to in one gesture make a tremendous difference for the afflicted and the bereaved: you bring us HOPE, something which eludes us all from diagnosis onward, through the death of our children.
In 2014, the first DIPG Awareness Resolution was decided in the California State Legislature by then Assemblyman Scott Wilk and State Senator Steve Knight, who is now my Congressman (R-CA-25), and we worked together in September of 2015 to draft the first national Resolution, H.Res.586 introduced 1/13/2016, and then re-introduced to the 115th Congress 1/30/2017 as H.Res.69. Meanwhile, in 2016, the Michael Mosier Defeat DIPG Foundation headed by Jenny Mosier in Bethesda, MD, began a “DIPG Across the Map” Program with the goal of getting as many States as possible to have the Awareness Day May 17, in honor of her son Michael who died May 17, 2015. So, H.Res.69 was introduced this way as well, with May 17 as the designated Awareness Day. H.Res.69 also asks, more importantly, that mortality rates and years of life lost have greater consideration in the research grant process, and raises awareness to the deadly statistics for pediatric brain cancer confirmed by experts Dr. Michelle Monje of Stanford University, and Dr. Adam Green of the University of Colorado, Denver.
2017 saw 21 States to have DIPG Awareness Resolutions, and this year, 2018, we have 31 states so far. Congress is not so quick to act—which is why we are coming to you in good faith. Among our supporters is the Oncology Nursing Society, as the nurses are the ones to witness the unending lines of diagnoses with no hope, and the tortured families, and the marginalization of our children for research funding. We thank you for your time and attention to this matter, and deeply appreciate your consideration for our children.
Very truly yours,
Janet Demeter
President, Jack’s Angels Foundation
32520 Wagon Wheel Rd.
Santa Clarita, CA 91390
818-400-2724
[email protected]
www.jacksangels.org
