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The importance of newborn screening for SMA

Rory and Carolyn met in seminary, fell in love, and got married. They decided to hold off on starting their own family while they settled into their first jobs in North Dakota. After a few years, they moved to Minnesota, where Rory accepted a job as a minister, and Carolyn enrolled in a hospital chaplain residency program. At the time, they did not know how important the decision to move would be for their future family. When they moved, neither North Dakota nor Minnesota had SMA on their newborn screening panel. It wasn’t until March 2018 that Minnesota adopted and implemented newborn screening for SMA, and then several months later, in 2018, Rory and Carolyn’s only son Edan was born.

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    • #24386
      Alyssa Silva

      Hey! Just wanted to drop in to share this link I found to be awesome.

      It’s The NY Times asking its readers to submit questions or what they’d like to see on their platform regarding disability and accessibility. I’ve noticed more conversations taking place online since the 30th anniversary of the Americans with Disabilities Act which is very hopeful. I can only hope these conversations will spark a movement for more inclusivity and acceptance.

      I’m glad the NYT is taking the time to learn more and be an ally for us. What do you hope to see in the media regarding disability?

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