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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 0 replies, 1 voice, and was last updated 2 years, 4 months ago by SMA News Today Moderator.

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      In the third episode of  Dose of DeAnn: A Glimpse Into My Life With SMA, DeAnn shares her thoughts regarding accessibility issues today. In spite of laws designated to prevent discrimination against people with disabilities, there are still buildings and areas all over the United States and in other countries which are inaccessible. This topic was recently discussed here on the SMA News Today adults with SMA forum.

      To share some of her experiences with inaccessible locations, DeAnn sits down with her nieces Lauren and Taylor to talk about a few of their summer vacations together. In one instance, they went to a downtown candy store which had a huge step right outside the front entrance. This of course prevented them from going in, and DeAnn talks about how frustrating that was.

      This episode ends with another installment of the Amazon Echo Show challenge, only this time DeAnn brings in her cat Tic-Tac instead of her dog Roy as the challenger. (And just a reminder: we’re giving away 10 Amazon Echo Dot speakers.)

      Be sure to subscribe to the SMA News Today YouTube channel so that you don’t miss an episode of this vlog, and you can also connect with DeAnn right here on the forums page.

      Can you relate to DeAnn’s frustration? Have you had issues with inaccessible buildings?

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