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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 3 replies, 3 voices, and was last updated 1 month, 3 weeks ago by LennoxConner.

  • Author
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    • #24411
      LennoxConner
      Participant

      Did everyone see that Twitter announced their employees will have the option to continue to work from home long after the pandemic is over?

      Like telehealth conferencing, I’m curious to see if this “new” practice is here to stay. I used quotations for ‘new’ because working from home isn’t some novel idea. But perhaps companies would be more open to it.

      This has actually been the case for my brother’s engineering company. They were adamant about keeping their office open but gave working from home a test run, and it has worked out much better than originally expected.

      Could this possibly be a great advantage to the disability community and finding work? What are your thoughts?

    • #24413
      DeAnn R
      Keymaster

      I’ve always worked from home. It’s a great option and I’m glad to see that companies are seeing the value of it as well. As long as productivity levels remain consistent I can’t see why this wouldn’t be an option long term. In fact I can see it offering companies a larger pool of employees to choose from as well, so win win from my perspective.

    • #24419
      Alyssa Silva
      Keymaster

      I’ve always worked from home as well. I definitely think this is a huge step in the right direction for employment opportunities in the disability community. It’s just a little discouraging that it took a pandemic to show that working from home is a viable and accessible option for us.

    • #24447
      LennoxConner
      Participant

      Did everyone see that Twitter announced their employees will have the option to continue to work from home long after the pandemic is over?

      Like telehealth conferencing, I’m curious to see if this “new” practice is here to stay. I used quotations for ‘new’ because working from home isn’t some novel idea. But perhaps companies would be more open to it.<style type=”text/css”><!–td {border: 1px solid #ccc;}br {mso-data-placement:same-cell;}–></style><span data-sheets-value=”{"1":2,"2":"https://omegle.onl/&quot;}” data-sheets-userformat=”{"2":268512,"8":{"1":[{"1":2,"2":0,"5":{"1":0}},{"1":0,"2":0,"3":3},{"1":1,"2":0,"4":1}]},"9":1,"10":2,"14":[null,2,1136076],"15":"arial,sans,sans-serif","21":1}” data-sheets-hyperlinkruns=”[null,0,"https://omegle.onl/"%5D”&gt;https://omegle.onl/</span>

      This has actually been the case for my brother’s engineering company. They were adamant about keeping their office open but gave working from home a test run, and it has worked out much better than originally expected.

      Could this possibly be a great advantage to the disability community and finding work? What are your thoughts?

      thankyou my issue has been solved

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