Neonatal Lupus is a potentially (and often) fatal heart disease affecting young children. Those who survive often need pacemakers. The Research Registry for Neonatal Lupus has, over 18 years, built a collection of rare genetic samples to study and find the causes and prevention of Neonatal Lupus. Now that our samples and technology are strongest, and ripe for analysis, we've been denied funding, even as our project was rated very highly by peer reviewers. This is like painstakingly tending crops, and being forced to watch them wither in the fields, without the means to harvest them. Meanwhile, children's lives hang in the balance.
Please reconsider and fund the Research Registry for Neonatal Lupus’ genotyping research (Application ID #13GRNT14710008R). This proposal was one the AHA reviewers scored very highly and that met high standards of academic peer review, and just barely missed the payline. Hundreds of families over the course of 18 years have supplied the materials to be analyzed, and if this research goes unfunded, an invaluable and unique opportunity and years of work will be lost!
The Registry has been a source of information, comfort and hope to our family; we have contributed to it for the sake of all the other families in it, and of the future. We stand behind its research and strongly urge you to allow it the means to continue. Please don’t cut it off, just when our most important goals are within reach!