Bill adds test to newborn screening panel

Gov. Eric Holcomb signed legislation co-sponsored by State Rep. Randy Lyness, R-West Harrison, adding a rare neurological disorder to Indiana’s newborn screening panel.

Krabbe is a rare genetic disease that destroys nerve cells in the brain and nervous system, causing muscle spasms, loss of head control and developmental delays in newborns.

These symptoms usually result within the first 6 months of a baby’s life and result in death by age 2.

“Getting ahead of this deadly disease and detecting it early is crucial,” Lyness said. “Babies often do not show symptoms of Krabbe for several months and unfortunately, it is too late for treatment once symptoms appear. Early screening is currently the only way to alert the parents and provide the best treatment options for the child.”

While there is no cure, stem cell transplants have improved outcomes for some infants who were treated early.

According to Lyness, two similar diseases, Pompe disease and Hurler syndrome, would also be added to the Indiana newborn screening panel.

To learn more about Senate Enrolled Act 41, visit


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