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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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    • #24485
      Kevin Schaefer
      Keymaster

      Hope you all had a great weekend! I’m sure the announcement regarding Evrysdi (Risdiplam) made it all the more exciting!

      Check out yesterday’s 31 Days story right here. This is one of my favorites, though they’ve all been great. Andy, whose partner is our very own columnist Katie Napiwocki, wrote about their relationship. He has a great perspective on being a partner to someone with SMA, and the nuances of caregiving. Andy also has a form of muscular dystrophy, and he and Katie met at MDA camp years ago.

      Hope you all enjoy this story!

      Do you have any takeaways from Andy’s story? Who here is in an interabled relationship?

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