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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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    • #24422
      Kevin Schaefer
      Keymaster

      Happy SMA awareness month everyone!

      Here at SMA News Today, we’re doing something special to commemorate this time of the year. Everyday in August, we’re featuring a different person in the SMA community. This project is called 31 Days of SMA, and it’s something we did last year as well. Contributors include teens and adults with SMA, parents, partners to people with SMA and siblings.

      Check out the first story right here. Ryan Manriquez writes about his relationship with his girlfriend Nora, and shares advice about dating with a disability. All of these stories will be available on our social media pages and our main site. We have plenty more to share in the coming weeks!

      Do you have any takeaways from Ryan’s story? What does SMA awareness month mean to you?

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