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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 4 replies, 3 voices, and was last updated 2 months ago by Kevin Schaefer.

  • Author
    • #24272
      Kevin Schaefer

      Hey everyone! Hope you all had a relaxing weekend.

      Like many people, I’m definitely feeling more drained and anxious lately. Being an extrovert, I’m having a hard time with extended hibernation. Some days are better than others, but it’s still a struggle.

      However, one thing that has helped me is having a couple close friends over for socially distanced visits. Yesterday, I had a couple friends over to watch a movie. We wore masks and stayed a few feet apart from each other, but it was nice to have some in-person interaction. Since we’re still going to be hunkered down for a while, we have to be creative when it comes to socializing.

      What about you all? Have you been able to do any socially distanced visits lately?

    • #24275
      Alyssa Silva

      Same here Kevin. We’re currently not letting anyone in the house (although I think we’re changing that soon for my PCAs to come back), so I’ve been having lots of backyard hangs. My parents and I really dressed up our patio this year to make it more inviting since we knew we would be spending more time out there. It’s really nice now. Have you ever considered renting a projector and doing an outdoor movie night? I know you’re a movie buff so I thought I’d ask! I’m gonna look into it.

    • #24285
      Patrick Lenihan

      I do have friends come over to the yard for social distancing visits. We only have a couple of people over at a time and masks are worn when we are less than 10 feet apart. Chairs are set 10 feet apart for those who don’t live in the same household. Pacific Northwest summers are amazing so even if there was no pandemic, we would be entertaining outside.

    • #24299
      Kevin Schaefer

      Great idea Alyssa! Yeah I’ve seen places doing drive-in theaters too, which is pretty cool.

    • #24300
      Kevin Schaefer

      That’s great Patrick! Yeah, it’ll be the way we do things for a while. We have a nice yard space as well.

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