Our mission is to advocate for ALD newborn screening & newborn screening for any disease with both a treatment and a newborn screening test that works.
 
This foundation's advocacy is always occurring on two levels: in the states and at the federal level.  We don't want to live in a country where a zip code or state line could be the difference between life or death for a child.  And we know you don't either.
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The Recommended Uniform Screening Panel (RUSP) is a list of disorders that the Secretary of the Department of Health and Human Services (HHS) recommends for states to screen as part of their state universal newborn screening programs.

Disorders on the RUSP are chosen based on evidence that supports the potential net benefit of screening, the ability of states to screen for the disorder, and the availability of effective treatments. It is recommended that every newborn be screened for all disorders on the RUSP.

The following conditions are on the RUSP, but are not yet being implemented in every state:

~ALD
~GAMT
~Krabbe
~MPS I
~MPS II
~Pompe

​Our goal is to ensure that every state has the funding it needs so that each state newborn screening lab is capable of testing its babies for ALL RUSP approved conditions. 

In other words, eradicate “death by zip code.”