Because of our families’ continuous support, the DBAF has been able to fund many important research projects. These awards have been International, supporting research in England, France, Sweden, and Italy in addition to awards made here in the US. The International nature of these awards is important because for a rare disease like DBA there are typically too few researchers in a single country to truly push research forward.
Research support highlights
- Early support for the DBA registry
- Support for clinical studies on DBA diagnosis, management, and treatment
- Support for the identification of DBA genes
- Support for studies on the role of ribosome synthesis defects in the pathophysiology of DBA
- Support for the creation of a zebrafish model of DBA
- Support for the creation of a mouse model of DBA
Now more than ever
With the current financial crisis affecting all quarters of our economy including both public and private enterprises, funding for virtually all types of research is likely to be adversely affected. Funding through the National Institutes of Health has been extremely tight in recent years. Fortunately, in 2004 the National Heart, Lung, and Blood Institute began a program to support research on the Molecular Mechanisms Underlying DBA and other Bone Marrow Failure Syndromes. This program provided a mechanism to ensure support for research on DBA despite the highly competitive environment for Federal research dollars. This support, together with research support from the Diamond Blackfan Anemia Foundation and the Daniella Maria Arturi Foundation, led to a period of unprecedented growth in our understanding of the molecular basis for DBA. It is unclear, however, whether the Federal Government will be able to continue its level of commitment to DBA research over the next few years. As such, the percentage of the total amount invested in DBA research that comes from private foundations will likely increase in the near future. Therefore, to maintain the momentum of the past 4 years towards gaining a better understanding of the molecular basis underlying DBA and more importantly, to begin to translate these discoveries into better treatments for children with DBA, the DBA Foundation needs your support now more than ever.