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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 2 replies, 2 voices, and was last updated 1 year, 5 months ago by Kevin Schaefer.

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    • #18159
      Kevin Schaefer
      Keymaster

      Happy Monday everyone! Hope you all had a great weekend.

      Check out the latest episode of the SMA News Today Podcast here. In this episode, I interviewed Angela Titcombe and her husband Justin. Angela is a schoolteacher from Houston, Texas who has SMA Type 2, and she and Justin got married in June of 2018.

      When Angela and I met on a panel at the 2018 Cure SMA conference, I knew I had to have her on the show. I was fortunate enough to get both her and Justin on, and they spent a lot of time in this interview talking about their story and relationship. This is hands down one of my favorite episodes of the podcast, and I hope you all give it a listen.

      Let me know your thoughts on this conversation, and be sure to subscribe to the podcast for more stories like this.

       

    • #18554
      DeAnn R
      Keymaster

      Great interview Kevin! Finally got a chance to listen to it. Perfect example of a couple who does what works for them. Love when he had that “ah ha” moment so early in their relationship after she dropped her phone. Something a lot of people never grasp. One time my Mom said she tried laying in one position most of the night herself and couldn’t do it and she said she didn’t know how I do it. Well, I do it because I can’t move. That was an “ah ha” moment for her. I typically turn once a night, rarely twice or not at all.

      I could never have been a classroom teacher. Sounds like a great career for her though. Glad Spinraza has helped with her energy and stamina. It’s really awesome her job can accommodate her because I think kids can learn so much about life at that age.

      • #18556
        Kevin Schaefer
        Keymaster

        Thanks DeAnn! Yeah I really enjoyed doing this one.

        That’s interesting about your Mom trying to sleep in one position all night to put herself in your shoes. I think people like us and caregivers don’t always quite grasp each other’s struggles fully, so that’s cool. Yeah, I have to turn at least once a night.

        And it was fascinating hearing Angela talk about her job. She mentioned last year at the SMA conference that her students help her out all the time, which is really convenient. And it is cool that her school is so accommodating.

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