Illinois Adopts Newborn Screening for Spinal Muscular Atrophy

ELK GROVE VILLAGE, Ill. - Aug. 15, 2018 - PRLog -- Legislation will help promote life-saving treatment of the leading genetic cause of death for infants under two years of age.

Chicago, IL., August 15, 2018 – Governor Bruce Rauner has signed Illinois SB 456, adopting newborn screening for spinal muscular atrophy (SMA). The legislation makes Illinois one of the first states to adopt permanent newborn screening for SMA. The legislation was sponsored by Senators Julie Morrison, Michael Connelly and Thomas Cullerton.

Spinal muscular atrophy (SMA) is a neuromuscular disease caused by a mutation in the gene survival motor neuron 1. In a healthy person, this gene produces a protein that is critical to the function of the nerves that control muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and often fatal muscle weakness.

A baby with SMA is born each day on average in the U.S. The most severe forms of SMA cause rapid motor neuron loss, providing a small window for optimal treatment—an opportunity often lost due to the diagnostic delays that many families experience.

"Illinois is leading the way to save the lives of babies born with spinal muscular atrophy.  SMA is currently the number one genetic cause of death for infants under two years of age, but we can change that through newborn screening and early treatment," said Kenneth Hobby, president of Cure SMA, a Chicago-based national non-profit dedicated to the treatment and cure of spinal muscular atrophy.

"We congratulate SMA advocates Kathleen Heinrich and Christian Schreck, Erik and Amy Peterson, Jill and John Zmaczynski, and Randy and Tracy Parlier for their efforts. We thank the sponsors of SB 456, Representatives Camille Lilly and Mark Batinick, and Governor Bruce Rauner on their quick action on this issue. We hope that more states will follow their lead in the coming months."

In July, Health and Human Services Secretary Alex Azar approved a recommendation, made in February by the federal Advisory Committee on Heritable Disorders in Newborns and Children, that screening for SMA be implemented nationwide. The decision to implement this recommendation ultimately rests with each individual state, making yesterday's signing a critical step in saving the lives of babies born with SMA.

"Newborn testing for spinal muscular atrophy has been recommended nationwide," Governor Rauner said in a statement released Tuesday. "Illinois will be a leader in the effort to detect and treat this life-threatening condition as soon as possible."

In addition to SB 456, Governor Rauner also signed HB 4745, sponsored by Michael McAuliffe, which will help reduce bureaucratic delays in the implementation of newborn screening.


About Cure SMA and the SMA Newborn Screening Coalition

Cure SMA is dedicated to the treatment and cure of spinal muscular atrophy (SMA)—a disease that takes away a person's ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.

Since 1984, Cure SMA has directed and invested in comprehensive research that has shaped the scientific community's understanding of SMA. Cure SMA has deep expertise in every aspect of SMA—from the day-to-day realities to the nuances of care options—and administers a wide-ranging roster of programs to support children and families affected by the disease. This includes the Annual SMA Conference, held each year for families affected by the disease, and for researchers and clinicians involved in treatment and care for SMA.

In addition to staff members from Cure SMA, the SMA Newborn Screening Coalition includes representatives from pharmaceutical companies Biogen, AveXis and Genentech/Roche.

Learn more at

Megan Lenz

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