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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, 3 voices, and was last updated 2 years ago by Ryan Berhar.

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    • #13957
      DeAnn R
      Keymaster

      I’ve been eyeing these cellphone holders for a while now: https://www.amazon.com/gp/product/B06XP29B2S/ref=ox_sc_act_title_1?smid=A9ZXMW2S3UE5Y&psc=1  My holdup is, would it make it easier to use or more difficult?  I thought it would be handy especially for making my vlogs.  On one hand I can envision how I’d use it and how much easier it would make certain things.  On the other I can see getting frustrated with it and tossing it in a corner chalking it up as a waste of money.  Do you guys use a cellphone holder?  Is it helpful or more of a hassle?  I can imagine struggling to get the phone into it, then not able to get it out.  There are also cheaper options.  Is it one of those you get what you pay for type products?  I’d love your input.

    • #13963
      Kevin Schaefer
      Keymaster

      For me personally, it would be too difficult. I like to keep my phone and iPad on my tray, and to have both hands on whatever device I’m using. Having it locked in one position would be frustrating for me, but I know many people with disabilities use them. I’d go to the Apple store or something and try it out first to see if it’ll work for you.

    • #13978
      Ryan Berhar
      Keymaster

      A method that I discovered is cutting a little slit in my harness. It makes a perfect phone holder. The size of the phone and harness may not allow for it, but worth considering at least.

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