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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, 4 voices, and was last updated 7 months, 3 weeks ago by Patrick Lenihan.

  • Author
    Posts
    • #22521
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you all had a great weekend.

      For today’s motivational post, I wanted to talk about maintaining long-distance friendships and relationships. Though I’m fortunate to still have plenty of friends in my home town, I also have many who have moved. Especially since college, I know a lot of people who now live in other states. Plus, out of all my friends I’ve met at SMA conferences, only a few live near me.

      I have several long-distance friends who I text and call pretty regularly, and I’m glad I keep in touch with these people. It’s especially helpful for me to have people in the SMA community who I can talk to on a regular basis.

      Do you have any long-distance relationships? How do you keep in touch?

    • #22531
      DeAnn R
      Keymaster

      Most of my good friends don’t live nearby.  It’s difficult because I don’t travel, and they generally don’t either.  We do make a point to text and call.  We do get together occasionally.  One benefit to technology and social media is being able to stay connected.

    • #22544
      Halsey Blocher
      Participant

      I also have several long distance friendships. My best friend lives in TX, and I have several other good friends in other states. Texting and Facebook are so important for maintaining these friendships. I guess I could always write letters (and do sometimes) but technology makes things so much easier. Of course, in person visits are always the best, but having easy ways to communicate is way better than nothing!

    • #22546
      Alyssa Silva
      Keymaster

      I do as well. I’ve met some people online and have developed friendships with them. I always thought that was a little strange to me— to befriend people you’ve never met— but living in the digital world makes it incredibly easy. I’m better for these people.

      My best friend since kindergarten also moved away a couple of years ago so we do the long-distance thing too. It’s hard at times, just because she’s my person. But we make it work with lots of texting. And the times we do get to see each other are that much sweeter. We actually just exchanged Christmas gifts over the weekend haha.

    • #22551
      Patrick Lenihan
      Participant

      My entire family and some of my closest friends live on the east coast and I live thousands of miles away on the west coast. I use phone calls, messaging and Facebook to keep in touch with them.

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