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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.


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      In the second episode of the SMA News Today vlog  Dose of DeAnn: A Glimpse Into My Life With SMA, DeAnn shares her perspective on traveling. Traveling by airplane or even going outside when it’s cold can be extremely difficult for individuals with SMA, and DeAnn talks about these challenges here and about trips she’s taken.

      In particular, she discusses the difficulties associated with SMA individuals and flying, which is a subject one of our columnists recently wrote about. Due to the complications with transporting a person’s wheelchair on an airplane, along with other limited accommodations, DeAnn shares her experiences and perspectives in regards to flying.

      MORE: The pros and cons of traveling in a wheelchair

      This episode also features the second installment of the “Roy vs. Alexa” segment, in which DeAnn challenges Roy and her Echo Show to provide her with a weather report. Then in the second half, DeAnn discusses her travel experiences and a little bit about her family. She ends the episode by sharing a series of family photos and discussing them.

      Be sure to subscribe to the SMA News Today YouTube channel for updates on Dose of DeAnn, and you can also connect with DeAnn here on the forums page.

      Do you have any tips for traveling with SMA? Please share! 

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