I've always found that parents are the ones that care most about DIPG. It is the parents that are the ones that go on fighting against DIPG hoping that one day other parents will not have to endure the same fate as their family. And it has made a difference. The parents that have donated their children's tumors, started foundations, created DIPG awareness, funded DIPG research and have brought researchers together collaboratively have made a changed the landscape for DIPG.
Jack's Angels Foundation is another parent-founded and led foundation in memory of a child who died from DIPG. The Foundation had their first fundraiser earlier this month hosting an art action ofchildren. student and trained artists' works. The proceeds are to go to Children's Hospital of Los Angeles DIPG Research.
Jack was just 3 years old when on October 28, 2011 he was diagnosed with a DIPG. Having difficulties with hs speech and right side and a sudden fear of looking up he was admitted to CHLA. Like so many children Jack had radiation and steroids which gave him time to go to Disney and ride the bus to preschool. With an eye on quality of life and an eye on hope, the family relates the CHLA doctors gave the "wisest possible cousel concerning available chemotherapies" and that he avoided losing precious time pursuing other therapies that have not been effective. Just 9 months later, Jack was born into Light on July 30, 2012.
Jack's Angels Foundation has formed to continue to fight agaisnt DIPG with funding of research at CHLA.
CHLA is one of the Pediatric Brain Tumor Consortium institutions. The physicians and researcher there have been quite interested in DIPG for some time. In fact, this has been one of the sites that has been specifically looking at imaging characteristics of these tumors. Although the trial is not open yet at CHLA, they collaborators of the upfront biopsy trial with molecularly determined treatment. Through the PBTC they are participants in the Imetelstat trial for recurrent DIPG. And through COG they are participants in the Vorinostat trial for newly diagnosed children with DIPG.
The news article says that CHLA and UCSF are working together and with other hopsitals in a loose consortium of researchers looking for new methods to treat DIPG. Clearly the upfront biopsy trial fits the bill as both institutions are involved. However, UCSF has also been doing great work on the advancement of understanding and treatment of pediatric brain tumors- from intranasal administration of agents to unravelling the importance of the K27M mutation. Since there are so few children with DIPGs, these collaborative efforts are important in pushing research forward as well as disseminating results as quickly as possible.
I am glad to hear this first art auction was a success- hopefully one of many more to come.
Reference-
3-year old's death from rare brain tumor prompts Agua Dulce mom to help find a cure
http://www.dailynews.com/ci_23211490/3-year-olds-death-from-rare-brain-tumor
Jack's Angels Foundation
http://jacksangelsfoundation.com/
Apparent Diffusional and Fractional Anisotrophy of Diffuse Intrinsic Brain Stem Gliomas
http://www.ajnr.org/content/31/10/1879.long
