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.
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