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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 5 replies, 2 voices, and was last updated 2 months ago by Alyssa Silva.

  • Author
    Posts
    • #24278
      Alyssa Silva
      Keymaster

      Yesterday, my brother asked me where the first place I’ll go is once it’s safe for me to emerge into the wild again. (That’s how I’m referring to life outside my habitat from now on.)

      I was being sassy and snippy, so my original answer was “probably lick public restroom doorknob or something.”

      But then I dropped my attitude and followed it up with my real answer which was Target. Or Home Goods. Or any store I can aimlessly browse and spend my money on. Online shopping, although convenient, doesn’t give that same customer experience for me. I know it sounds trivial, but it’s the little things I’m missing these days.

      What about you? Where’s the first place you’ll be going?

    • #24286
      Patrick Lenihan
      Participant

      Seeing live music at a small theater or club, dining out at a restaurant or pub or going to Vancouver BC for the day.

    • #24288
      Patrick Lenihan
      Participant

      In my dream world where money is no object, I would hop on a plane to TF Green and get a ride to Aunt Carrie’s for some clam cakes, RI clear broth clam chowder and a hot lobster roll. Maybe wash it down with a Dels while sitting on Salty Brine Beach and then take a ride to the Fantastic Umbrella Factory.

    • #24290
      Alyssa Silva
      Keymaster

      Living like a true Rhode Islander! How do you know about my little home state!?

    • #24301
      Patrick Lenihan
      Participant

      I am originally from Stonington Ct but I lived in Charlestown RI from the age 9 until I moved to the Pacific Northwest when I was 38. I am a URI grad and used to spend a lot of my free time in Providence. Many of the places I frequented like the Cable Car Cinema, Lupos, Stone Soup Coffee House and Club Baby Head are long gone. After last call, I’d often go up to Thayer St. to get a bite to eat. Once in awhile we’d go to Wes’s in Olneyville for ribs and pulled pork after the bars closed. My friends would piggy back me up the stairs so I could eat there. I also used to go to folk music concerts at The Blackstone River Theatre and at Chans in Woonsocket. Most of my family still live in RI and south eastern CT.

    • #24302
      Alyssa Silva
      Keymaster

      Sounds like you really lived it up in the ocean state. A lot of the places you’ve been are gone like you said, but Providence has really evolved in the last decade or so. Lots of coffee shops, some rooftop bars, etc. My favorite spot in RI is by the rocks at Salty Brine Beach. Been going there my entire life, so it’s what I miss most right now.

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