1853 Surrey Court
Board of Directors
Christine Martin, Florida
Just One More Day for Love, Hope & a Cure
Pediatric diffuse intrinsic pontine gliomas (DIPGs) have grim statistics. Because most DIPG are not currently biopsied, very little is known about these tumors beyond location and appearance on imaging. Despite dozens of trials there is no treatment that effects overall survival. Many researchers believe the way to a breakthrough on this tumor is to have tissue for analysis.
Available tumor tissue is the rate limiting factor.
Currently, there are several institutions across the United States doing molecular research on tumor tissue samples obtained at autopsy (or in the rare case by biopsy). Some of these studies utilize paraffin block and others frozen tissue. Our foundation, Just One More Day, is collecting summaries and contact information for all ongoing research on DIPG Tumor Tissue Analysis at www.JustOneMoreDay.org (left hand button- Tumor Tissue Analysis)
After a family expresses the desire to donate to research, the most effective next step is for the primary physician to contact one of the researchers. These researchers have worked with families before and can be quite helpful in explaining the mechanics of donation. Often one specimen can be split and shared with several programs, hopefully moving scientific discovery further and faster.
If you are receiving this letter then it is very likely that a family is asking you to assist them in making this incredible gift. We ask that you do all that you can to help a requesting family make this gift. Please make the calls. It will make a difference.
Just One More Day
Last Update April 25, 2009