Missouri is the First State to Institute Newborn Screening for Spinal Muscular Atrophy

Governor Eric Greitens today signed into law Missouri Senate Bill 50, instituting newborn screening for spinal muscular atrophy (SMA). The bill makes Missouri the first state in the country to screen all newborns for SMA. The legislation was sponsored by Representative Becky Ruth, a legislator with a longstanding commitment to expanding newborn screening efforts.

Newborn screening, combined with early treatment, is the best chance we have to change the course of SMA for the next generation. We are thrilled that Missouri, through Representative Ruth’s leadership, has taken this important step. We envision Missouri becoming the model that other states can follow as we work to move SMA newborn screening forward.

As we shared in May, SMA has advanced into the evidence review stage for the federal Recommended Uniform Screening Panel (RUSP). While a successful RUSP application will strongly support our case for implementation, in most states we do not need to wait for a decision in order to continue advocating for newborn screening.

The legislation just passed in Missouri is a great example of how our community can move newborn screening forward while we also continue work on the RUSP. The decision on implementing newborn screening for SMA ultimately rests with each individual state, meaning we will need “SMA champions” in all 50 states to help move this project forward.

“I am so happy to know the impact that this will have for so many families,” said Grace Grutter, whose daughter, Nella, has SMA type I. Grace testified before both the Missouri House and Senate in support of the newborn screening bill. “Since Nella has come into our lives, we’ve seen the difficult side of SMA, but we’ve also seen the joy and determination of our daughter as she battles SMA. We hope that, in working for efforts like this, we reflect a little bit of her joy and determination back on behalf of the SMA community.”

We thank Representative Ruth for her invaluable work in moving this legislation forward. We also thank the families who advocated in support of the bill, particularly Grace Grutter and Leslie Derrington. Finally, we thank our partners in the SMA Newborn Screening Coalition for their dedicated work in support of this effort.

Members of the SMA Newborn Screening Coalition include representatives from pharmaceutical companies Biogen and AveXis, and staff members from Cure SMA.

Grassroots Advocacy Opportunities

Missouri is the leading edge of our recently launched nationwide campaign to institute newborn screening in all 50 states. To learn more about this campaign, see our recent announcement.

To help support our community’s efforts in moving SMA newborn screening forward, we will be offering a number of advocacy training opportunities and materials.

  • We held a newborn screening symposium at the Annual SMA Conference. The purpose of this symposium was to train our community to advocate for newborn screening in their respective states. Representative Becky Ruth, sponsor of the Missouri legislation, was be the featured speaker at this symposium. 
  • We will host a newborn screening webinar later in the summer, to provide this training for those who were not able to attend the Annual SMA Conference 
  • We released an advocacy toolkit: Newborn Screening for SMA: Tools for Advocates Working to Improve Children’s Lives. The toolkit covers an overview of SMA, an introduction to effective advocacy across different levels of government and legislation, and leave-behind resources including an SMA fact sheet, a one-pager on the importance of newborn screening, and a series of key talking points for policymakers. 
  • We’ll also be releasing a new suite of advocacy tools that will make it easier for our community to connect with their elected officials directly.

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