Resources

Press Release

Read the announcement launching the Surge to Save Newborns coalition and highlighting a new study on the estimated cost to end state-by-state variability in newborn screening.

Issue Brief

Use this strategic roadmap to guide your support for this small, but crucial investment to ensure every state is screening for every approved condition.

Study Report

Download the state-by-state data and the cost assumptions from the recently-released study driving this immediate, one-time funding surge.

Map

Download this map from the recently-released study for a breakdown of what it would cost for each state to screen for all outstanding RUSP conditions and two additional, yet to be approved conditions.

In the News

‘Death by ZIP Code’: Newborn Screening and the Geographic Screening Lottery

A decade after her son Aidan’s death, Elisa Seeger co-founded the Surge to Save Newborns Coalition in March 2026 to eliminate state newborn screening panel disparities.

‘I lost my son.’ Group wants funds for newborn screenings to keep more Florida children alive

Elisa Seeger’s son, Aidan, was 7 when he died from a rare condition that could have been treated early if he had been screened for it as a newborn. Although Florida is one of the states that screens for adrenoleukodystrophy (ALD), the condition that Aidan died from, it lacks expert-recommended newborn screening for three other conditions for which some states screen.

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