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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 1 reply, 1 voice, and was last updated 1 week, 2 days ago by Stacy Moore.

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    • #24809
      DeAnn R
      Keymaster

      Hey everyone, I hope you all are doing well.

      In my latest vlog, I wanted to have a little fun. Spending so much time at home, I’m on a quest to find a hobby I can do on my own. I decided to try my hand at flying a drone. You’ll get to see how it works for me here. Hope you enjoy this episode!

      Do you have any tips on flying a drone? Any hobbies you’d like to share?

    • #24824
      Stacy Moore
      Participant

      You’re a much better pilot than I was! My brother in law let me fly his in July while they were here for the 4th, and I was so nervous. The best thing about his is that it will stay in one spot on its own, until you try to fly it around. His drone was slightly larger than the one you have, but his remote connects to his phone so I could see what the drone sees through the camera. I took it over a wooded area behind our house and I’m not sure if my hand hit something on his phone or the remote, but the screen went black. Thankfully all he did was press the return to home button and it came back and landed by itself. I was so nervous and upset though, I thought I had lost his drone. I imagine with a lot more practice though, it would be a fun hobby to have. One of the hobby’s that I have is helping my mom with our gardens. I basically just help point out weeds in our main garden from the edge, but we also have two small raised beds on our back patio that can help with more.

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