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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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    • #24471
      Brianna Albers
      Keymaster

      Hi everyone! I’ve been talking with my friend in Singapore who also has SMA about SMA Awareness Month. She wrote up a succinct but thought-provoking post about it that I thought I would share.

      How do you feel about SMA Awareness Month? Does it help you feel “seen”? Or does it feel like a task for you?

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