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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 5 replies, 3 voices, and was last updated 2 years ago by Ryan Berhar.

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    • #14193
      Kevin Schaefer
      Keymaster

      As I’ve written about multiple times in the past, I received a JACO robotic arm several years ago through the company Kinova Robotics (http://www.kinovarobotics.com). This arm is mounted to the side of my wheelchair, and it provides me with a wealth of independence. I use it to eat, drink, pick up objects and show off in public. Now, fellow SMA News Today columnist Ryan Berhar has one as well.

      Especially for those of you who have limited arm strength, I highly recommend looking into this company and the JACO robotic arm. Feel free to ask me any questions about acquiring one, how I use it, or anything else. Acquiring my arm in 2015 changed my life, and I’m more than happy to spread the word about this innovative company.

    • #14210
      DeAnn R
      Keymaster

      Very cool. I think one common question might be with limited mobility how do you actually control it?

      • #14213
        Kevin Schaefer
        Keymaster

        So the arm is fully controlled by the joystick on my chair. Ryan and I both have severely limited arm strength, and we can control ours fine. I tell people that if you can operate an electric wheelchair, you can control one of these. Let me know if you want to look into one, or to just try one out.

      • #14216
        Ryan Berhar
        Keymaster

        It’s controlled with the joystick. So as long as you can operate your chair, you can operate JACO. You’d probably be surprised at how simple it is to install and operate.

    • #14221
      DeAnn R
      Keymaster

      Another basic question I have, is it connected to your chair permanently? Also, is it cumbersome to work around for cares and such?

      • #14222
        Ryan Berhar
        Keymaster

        The mount, which takes up basically no space, is bolted on, so it’s more or less permanent. Putting the arm on and off is pretty simple. You just set it on the mount, tighten the clamps, and screw on the two cables. To take it off, simply reverse procedure. This process takes maybe a minute. I will say that it is a bit cumbersome. Depending on how you transfer, you may need to remove it each time. My dad can lift me over it, but my mom and grandma have a tougher time, though they do it anyway. I think it would work fine with a hoyer lift.

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