Robert and Ben have Neonatal ALD which is now known to be a - TopicsExpress



          

Robert and Ben have Neonatal ALD which is now known to be a recessive genetic type of peroxisomal disorder on the Zellweger Spectrum. The dominant gene ALD research (see below) is where we began on our long journey. Those old enough to remember the movie Lorenzos Oil will have a context for the petition below--not much has changed for these families, or for us who are in the related and even rarer groups, although the research progress has been dramatic over the past 40 years. Please sign this petition so that families have an opportunity to prepare for their journey.
Posted on: Sat, 20 Dec 2014 10:05:21 +0000

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