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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 6 replies, 3 voices, and was last updated 1 year, 11 months ago by Ryan Berhar.

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    • #14463
      Ryan Berhar
      Keymaster

       

      In this video, I give a tutorial on how the JACO robotic arm works. Let me know if you have any questions.

    • #14469
      Kevin Schaefer
      Keymaster

      Thanks for sharing Ryan. Yeah it becomes even easier to use the more you practice.

      It was interesting watching too how your arm strength is. You actually have a little more ability than I do. I can’t lift or move my arm at all. The most I can do with it is move my hand some across my tray and operate my joystick and control switches. It’s just interesting.

      • #14506
        Ryan Berhar
        Keymaster

        That’s how my left arm is. I can’t move it at all. My right arm still has some ability left.

        • #14507
          Kevin Schaefer
          Keymaster

          Gotcha. Yeah my ability in my right arm lasted a little longer than my left. That’s my driving hand, so it gets more use.

    • #14489
      DeAnn R
      Keymaster

      Thanks for showing is that!  I know for myself it seems like it could be intimidating, but your video helps a lot.  Sounds like the company has been really great to work with.  Did they come to you or did you need to go to them?

      • #14493
        Kevin Schaefer
        Keymaster

        DeAnn, Kinova really is a fantastic company to work with. They are based in Canada, but they have technicians in the U.S. I’d recommend reaching out to them and setting up an appointment. They can bring you a prototype to try out and see if it’s a good fit for you. Email me and I’ll give you a contact.

      • #14509
        Ryan Berhar
        Keymaster

        Glad to help. Once I got in touch with the right person, he came to my home in Oregon within the week. Kevin and I would be happy to connect you if you’re interested.

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