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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 2 replies, 2 voices, and was last updated 8 months ago by Alyssa Silva.

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    • #22390
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you’re all having a great week so far. Check out the latest installment of the SMA News Today Podcast here.

      In episode 52, I talk with my coworker Luisa Palazola, a Community Manager for SMA News Today. Luisa is from Memphis, Tennessee, and she has another rare genetic condition called cystic fibrosis. During this conversation, she talks about her story and advocacy work, what she’s learned about SMA through her work here, and the upcoming event Rare Disease Day.

       

      To learn more about Spinal Muscular Atrophy, visit http://www.smanewstoday.com.

    • #22401
      DeAnn R
      Keymaster

      Great discussion! It’s easy to draw parallels between SMA & CF. Thanks for sharing your experiences Luisa. You’ve got an awesome spirit. Glad to get to know you even more with this podcast. Keep up the great work with the social media campaigns!

    • #22406
      Alyssa Silva
      Keymaster

      Luisa, you are my WCW every day. This was a great podcast, you guys! It’s amazing how we can all have different stories, yet the thread that weaves us together is the art of storytelling. 😊

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