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Ruth receives national award for work on newborn screening legislation

  

WASHINGTON, D.C. – Missouri State Representative Becky Ruth has been honored with a national award for her 2017 legislation on newborn screening.

The Republican from Festus was presented with the Abbey RareVoice Award Wednesday at a reception in Washington.

The award is given out by the national organization, Rare Disease Legislative Advocates, and the Every Life Foundation.

Ruth was one of 23 nominees for the award, but only of two state legislators who had been nominated for the State Advocacy: State Legislator category.

Ruth’s legislation, SB 50, was signed into effect this past summer, instituting newborn screening for spinal muscular atrophy (SMA). The bill will make Missouri the first state in the country to screen all newborns for SMA, the leading genetic cause of death for infants under two years of age. The bill also institutes statewide newborn screening for mucopolysaccharidosis type II (MPS II, also known as Hunter syndrome).

This year marked the 6th year for the awards, putting a spotlight on the efforts of those advocates who work to give a voice to patients living with rare diseases.

The award recipients are chosen by a committee from nominations received from the rare disease community.

Those who are selected receive an “Abbey” statuette commissioned specially for the RareVoice Awards and named for Abbey Meyers, founder of the National Organization for Rare Disorders (NORD).

“The real heroes are those that are living with rare disease every day, and their families that are fighting,” Ruth said while accepting the award. “We cannot take no for an answer. We can’t stop this fight; we have to continue on. We’re going to start screening for SMA in Missouri, and I’ve heard from many other states that are interested in doing this as well. But there are more rare diseases that we need to keep fighting for.”