Cure SMA Launches Newborn Screening Grassroots Advocacy Campaign for Spinal Muscular Atrophy Newborn Screening

Today, as part of the Annual SMA Conference, we announced the launch of a new grassroots advocacy campaign to implement newborn screening for spinal muscular atrophy. Today’s kick-off event is a symposium on newborn screening advocacy, held as part of the Annual SMA Conference in Orlando, FL.

One state, Missouri, has legislation pending instituting statewide newborn screening for spinal muscular atrophy. The legislation has passed the house and the senate, and is waiting to be signed by Governor Eric Greitens. Rebecca Ruth, a Missouri state legislator from the St. Louis area, was the lead sponsor of this legislation. Representative Ruth is also the featured speaker at today’s symposium.

Each state administers its own newborn screening panel, which means the current advocacy campaign will move forward on 50 different fronts. States receive guidance in their decisions from the federal Recommended Uniform Screening Panel (RUSP), administered by the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), part of the U.S. Department of Health and Human Services.

In May, the committee announced that they had accepted the nomination of SMA to the RUSP, and moved it into evidence review, a six- to nine-month process. The intention is for the grassroots advocacy campaign to run alongside the RUSP evidence review process, maximizing our community’s opportunity to move screening forward on both the state and federal levels.

The next phase of the campaign will take place in August, SMA Awareness Month. The SMA community will visit with elected officials during the month of August, hoping to draw further attention to the urgent need for newborn screening as well as other issues that impact our community, including President Trump’s proposed FY18 budget.

Newborn Screening Resources

All the resources distributed at the symposium are available on our website.

Forthcoming resources include:

  • A recording of today’s symposium 
  • An advocacy training webinar, for those who were not able to attend this year’s conference 
  • A new suite of online advocacy tools that will enable our community to connect with their elected officials directly 
  • A guide to setting up an SMA Awareness Month advocacy visit.

If you have questions, please email [email protected].

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