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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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    • #22997
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you’re all staying safe, healthy, and as sane as humanly possible right now.

      To get your minds off of all this craziness, check out the latest episode of the SMA News Today podcast here. I chat with Victor Guerra from Fresno, California. Victor is an entrepreneur who has SMA Type 2, and he uses his online store to promote messages of positivity and motivation. He talks about growing up with SMA, building his business, and dealing with medical setbacks throughout his life.

      This conversation is a roller-coaster, and I hope you all enjoy hearing Victor’s story. Let me know your thoughts, and follow Victor on Instagram

      Do you have any takeaways from this conversation? 

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