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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, 3 months ago by DeAnn R.

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      DeAnn R
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      In the latest episode of Dose of DeAnn: A Glimpse Into My Life With SMA, I talk about getting a haircut. Given that it’s summer and I was in desperate need of a trim, I talk about this process and share my tips for getting a haircut when you have SMA.

      The salon I go to is my cousin’s, which makes it easy because she knows my needs. Before she starts cutting my hair, she helps remove my headrest on my wheelchair so that it doesn’t get in the way. I also have her put an extra blanket behind me to catch all of the hair on both sides, and to keep it from getting all over my chair.

      One other tip I have for SMA individuals is to wash your hair at home. Unless you have a method of transferring yourself out of your wheelchair when you’re at the salon, doing it at home is much easier in my opinion.

      Be sure to subscribe and check out the SMA News Today YouTube channel, where you can find all episodes of Dose of DeAnn: A Glimpse into my Life with SMA. You can also connect with me directly, right here on the forums page. 

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