Can't thank you all enough for your support. Continue to share; we may not succeed at hundreds of thousands, but it's an important part of the process in raising awareness for the urgent need for this research to be prioritized by the government. I'm afraid the problem is symptomatic of recent trends to value big corporations and their profits for a few, over work for all of humankind. We need to start the wake-up call with our children. They are coming dead-last.
Stay tuned for updates, and please insist that your representatives in Congress support the S.T.A.R. (survivorship, treatment, accessibility, research) Act for supporting our children with cancer in the United States. Follow link: http://jacksangelsfoundation.com/wp-content/uploads/2015/09/Childhood-Cancer-Star-Act-One-Pager1.pdf
To: The President of the United States
DIPG Awareness Day--support change for the lack of cancer research funding for our kids!
Declare a National Awareness Day for the most lethal of pediatric brain tumors--DIPG-- responsible for 80% of the pediatric brain tumor deaths each year, and for which the invariably terminal nature has seen no change in over 35 years. Brain cancer is the leading cause of cancer-related death in children, which is first after injury and accidents. HRes586, an Awareness Resolution needing support in the House of Representatives, asks for more consideration for low survival rate cancers (urgency of need) and years of life lost (our children) with the NCI research grant process.
Why is this important?
WHY DIPG? Grief begins at diagnosis, and has been for decades for thousands of families. DIPG is an ambassador for childhood cancer awareness in that it is a poignant example of a childhood cancer marginalized as being "rare" despite the fact that it is a common pediatric brain tumor (12% incidence out of 170+ varieties) and responsible for so much devastation. No family should ever be told that their child's life doesn't matter because they're a number, but it happens all the time. DIPG is so awful an experience that finally a critical mass of the population has been reached such that we are banding together and insisting on attention--for those currently suffering, and those to follow in the future. This unacceptable reality must change!
ALL CHILDHOOD CANCERS are categorized as rare, no matter how many cumulative deaths, how regular the frequency and incidence...200-400 children each year are diagnosed with DIPG, diffuse intrinsic pontine glioma, and for the last 35 years, families are told there is nothing to save their child from certain death. When the question is posed as to why no effective therapies have been developed, the answer is always the same: "Not enough numbers for investors."
Currently in the USA, the choices are made through the National Cancer Institute to designate only 4% of their annual research budget to pediatric cancer research as a whole. When so many have been dying for so many years, invariably, from one of the most malignant of cancers, and nothing has been done, it is obvious that our system is dominated by short-term profits. Most scientists agree that progress with the pediatric varieties of cancer will invariably help cancer research, and our understanding of biology and medicine. For our children's sake, we need to make an effort to put the value of our children's lives before quick returns on investments for big corporations. ESPECIALLY where our tax-dollars that are allotted for cancer research are concerned!
Thank you for so much for your attention. The suffering of these children and their families must be addressed nationally for there to be effective changes made. California has taken the lead by declaring in 2014, the fourth week in May to be DIPG Awareness Week in California. Pennsylvania followed suit February 22, 2015, and the State of Maryland with May 17 2016. Help us ask the President all together to declare a National DIPG Awareness Day--or Week!-- as noted in HRes586! (www.hres586.com)