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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.


This topic has 0 replies, 1 voice, and was last updated 1 year, 2 months ago by Brianna Albers.

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      Brianna Albers
      Keymaster

      Happy Tuesday! In my latest article, I revisit the title of my column, “The Wolf Finally Frees Itself.” I met several people at the 2019 Cure SMA conference who knew me and my column, and at one of the meet-ups, I was called a social media influencer. It’s easy for me to forget that people keep up with my writing! I have a bad habit of submitting my columns every week and just… forgetting about them. 

      Throughout the conference, I kept thinking of my column. A lot has changed since I first started writing it. I graduated from college, completely changed my career path, and nearly finished the first draft of my book. It’s interesting looking back on old columns and seeing how much things have changed. In a way, my column is a record of all the changes that have occurred over the past two years. They’re a witness to all the different ways I’ve managed to free myself.

      Since we’re halfway through 2019, I’m curious as to the changes you’ve noticed over the past couple of years. What sticks out to you?

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