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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 8 replies, 5 voices, and was last updated 8 months, 4 weeks ago by Halsey Blocher.

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    • #21799
      Crystal
      Participant

      I hope you all have a wonderful Christmas! Did you get what you wanted? Did you get more than you wanted? I didn’t exactly get everything I wanted, but I did get a few gift cards. Lol. I got a few small notebooks from my brother, which is exactly what I wanted. I plan on using them to work on a script idea for a movie that shows what life is like when you have SMA. (Btw, any suggestions for what I should include in the movie? Any tips for writing a movie about disability? What would you want to see in a movie about SMA?) My brother also got me a movie about Jesus called The Son Of God that looks really good. From my moms, I got new robe, stylus pen for my tablet (which I’m using right now), a stand to hold my tablet for me while I’m laying down, new earrings that are crosses, a Spider-Man game for the PS4, a back scratcher, and Witchcraft and Monsters by Kala Godin! I’m so excited to read it!

    • #21800
      DeAnn R
      Keymaster

      Merry Christmas to you as well!  Sounds like you’ll certainly be keeping busy.  You’ll have to let us know how the book is.  I know there are a lot of avid readers in the group.  Kala’s articles are always a good read.

      My surprise was a drone.  It has a camera on it, but first I have to learn how to fly it, lol.  The directions aren’t very good, I think they were written in a foreign language and translated to English. Hoping YouTube will provide some guidance.  It’ll be fun to figure it out.

    • #21801
      Crystal
      Participant

      Lol. I’ve actually already finished the book. I don’t always read, but when I do, I finish books in one sitting. Lol. But it was really good!! Very relatable. I especially love the poems Love Potions, Millennial Warfare, Broken Mechanics, and Shipwrecks and Salt Water. That last one is very inspiring. I also tried playing my new Spider-Man game. It’s hard! But fun!

      Drones sound cool! I’ve seen videos on YouTube where they put a camera on the drone and caught footage of what the drone saw from above. It’s so cool! I hope you can figure it out and have fun!

    • #21802
      Halsey Blocher
      Participant

      Holy cow, Crystal! I can’t believe you finished it already! Kala is a very talented writer so I’m sure it’s great.

      Im also a book worm, so I also got several books that I’m looking forward to digging into, as well as a sweater that I’ve had my eye on for a few weeks.

      Glad you both enjoyed Christmas!

    • #21804
      Crystal
      Participant

      She is a very talented writer! It’s a great book for anyone but especially for other people with SMA.
      What kind of books did you get?

    • #21806
      Kevin Schaefer
      Keymaster

      Merry Christmas everyone! Hope you’re all enjoying the holiday season, whatever you celebrate.

      Crystal, have you checked out The Screenwriter’s Bible? That’s a really good resource.

    • #21808
      Alyssa Silva
      Keymaster

      Merry Christmas friends! Sounds like everyone made out well with their gifts. I asked for a record player which I got. However, my parents forgot to buy me records so right now it’s just sitting pretty on a bench in my bedroom haha. I also got a bluetooth thermostat to control on my own which I’m very excited about!

    • #21810
      Crystal
      Participant

      A Bluetooth thermostat?! That’s so cool! I’m jealous. Lol. Although I got a few fuzzy and warm blankets and a robe so I can’t really complain.

      Kevin, I haven’t read The Screenwriter’s Bible yet, but I want to. I have read The Idea by Erik Bork and that was really helpful. I’ve also recently read The 21st Century Screenplay: A Comprehensive Guide to Writing Tomorrow’s Films by Linda Aronson and that’s a wonderful book. Very in depth too.

    • #21811
      Halsey Blocher
      Participant

      I got one about Queen Elizabeth (I find her extremely interesting), and a few Doctor Who ones.

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