Enough of the "rare" label for DIPG and other childhood cancers!

                        (picture of Jack, beloved son, 8/30/08-7/30/12)
DIPG, diffuse intrinsic pontine glioma, is responsible for 80% of pediatric brain
tumor deaths annually, brain tumors being the leading cause of cancer related death in children.  For decades DIPG has had no survivors yet, like most all other childhood cancers, it is marginalized as a "rare" or "orphan" disease--a pharmaceutical industry appellation--and thus labeled undeserving of research funding.  Many of the parents of children afflicted with DIPG and other deadly childhood cancers that have seen no progress in 40 years are beginning to stand together in sending the message that this is an unacceptable reality in the United States of America.  The National Cancer Institute's annual budget for research allows only 4% to benefit research for childhood cancers as a whole.  A large portion goes to cancers for which we have already developed helpful therapies.  We would like to see our children’s lives precede corporate profit margins in the decision-making process regarding the delegation of funds, that there should be no question about it.  No short-term research investment profits should be considered more important than pediatric cancer research that most oncologists agree could, in its progress, signify a quantum leap for our science and understanding of biology.

Jack's Angels Foundation's programs for raising awareness include supporting the arts and education for children in our local community(Santa Clarita Valley, Acton-Agua Dulce).  Our annual event "Art for Jack" is evolving into a music and art festival for children for 2015.  We are collaborating with Center Stage Opera, based in the San Fernando Valley, in forming a children's choir to concertize and participate in CSO's production of "Carmen" in June 2015.  The events raise awareness and proceeds benefit the DIPG research fund at Children's Hospital Los Angeles, established in 2013.  We hope to encourage and support the formation of such funds at every children's research institution in the US in the next 5-7 years.  "Project Angelbox," in its beginnings, strives to provide a newly diagnosed family with comfort in the hospital, and art supplies to any child who's family makes a request or a to whom a representative of Jack's Angels reaches out.  All of our work is volunteer-based and donation funded.  We currently have no sponsors, and are concerned with the survival of our new organization.  Your support in buying a t-shirt, and in so-doing helping us to raise awareness for the unacceptable numbers concerning the lack of funding for childhood cancers, is priceless.  Thank you for considering the lives of these families that have been devastated.  Our prayer remains, on the t-shirt:  "May light and hope one day replace grief and despair at diagnosis for DIPG children and their families."
'Focus on Pediatric Cancer' Conference, Feb. 14, 2014, NIH, Bethesda MD