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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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    • #21866
      Kevin Schaefer

      Hey everyone, hope you’re all having a great week so far!

      Check out the latest podcast episode here. I interviewed Ashley Fox from Southern California. Ashley is currently studying psychology at a community college, and she has SMA type 2. She talks about growing up with SMA, becoming a cheerleader in high school, and recently starting Spinraza. She’s also one of many people who I met at last year’s Cure SMA conference.

      This was a fun conversation, and a great way to kick off the new year. Hope you all enjoy it!

      Can you relate to Ashley’s story? Do you have any takeaways from this conversation?

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