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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 3 replies, 4 voices, and was last updated 2 years, 2 months ago by DeAnn R.

  • Author
    Posts
    • #13017
      Anna
      Participant

      Hi,

      my Name is Anna. I’m 40 years old, have SMA type II and I live – together with my identical twin sister – in the wonderful City of Berlin in Germany.

      I’m a medical doctor and I’ve been working fulltime for the Federal Ministry of Health for the last 11 years. I’m also on the board of SMA Europe which is an European umbrella organisation of national SMA organisations.

      Next to my work I love to spend time with my Friends, to cook and eat together. I really enjoy travelling around the world to meet other People.

      I would love to stay in contact with those I met in Dallas and to learn from others or Maybe help some of you.

    • #13018
      Kevin Schaefer
      Keymaster

      Thanks for posting Anna! It was great meeting you and Friederike in Dallas, and having you both on the podcast. For users out there, please give this episode a listen if you haven’t already: https://soundcloud.com/sma-news-today/sma-news-today-podcast-10-friederike-and-anna-wittchen-from-curesma-2018.

    • #13028
      Michael Morale
      Keymaster

      Hey Anna, this is Michael Morale. We met at the conference. It was a pleasure meeting you and your sister and I would love to stay in contact with the both of you.

    • #13267
      DeAnn R
      Keymaster

      It was great to hear your story!  Sounds like you sure have had some travel adventures.  I don’t recall if you discussed this, do you have a favorite travel destination?

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