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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 SMA News Today Moderator.

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      In the latest episode of Dose of DeAnn: A Glimpse into my Life with SMA, DeAnn talks about her latest Spinraza injection. Spinraza is the first and only FDA-approved treatment for spinal muscular atrophy, and DeAnn just received her first maintenance dose.

      This episode opens with the Amazon Alexa segment, in which the challenge is to determine which is more expensive: gold or one injection of Spinraza. Depending on your familiarity with Spinraza, the answer may surprise you.

      From there, DeAnn explains in more detail what Spinraza does, and talks about how her treatment process has gone so far. This video also features clips of her visit to and from the hospital for her last injection, as well as some more commentary about the drug’s effects.

      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 DeAnn directly, right here on the forums page.

      Do you have any questions about Spinraza? Leave them here — or visit our Spinraza forum

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