ALD was added to the Recommended Uniform Screening Panel (RUSP), a federal list of all genetic diseases recommended for state newborn screening (NBS) programs, in February 2016. However, at this time, only FIVE states actively test their newborn population for this potentially fatal disease (California, New York, Connecticut, California, Pennsylvania, Minnesota). These states are dedicating time and resources to identify these young patients and their families. ALD Connect wants to offer additional support and information for these families as they navigate the unknown terrain of a new ALD diagnosis.