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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 11 replies, 4 voices, and was last updated 2 years, 1 month ago by DeAnn R.

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    • #13285
      DeAnn R
      Keymaster

      Any recommendations for a good remote control app, or what do you use to control your television? I’ve been using the PeelSmart app and the advertisements have gotten out of control. I’m not about to pay for the ad free experience they want me to, but it’s physically taxing to click the ads off multiple times. Now they even have ads pop up when the app isn’t even open. Traditional remotes aren’t really an option as they’re so bulky and buttons are hard to press.

    • #13286
      Michael Morale
      Keymaster

      This is a great question DeAnn. I have wondered the same thing. We have DirecTV, and when I lay on my back in bed to watch TV, if it wasn’t for the favorite list and a guide button being in the location that there in, it would make it very difficult for me to use the remote. They need to come up with a voice controlled remote that we can hook up to our televisions so that we would have the ability to turn the volume up or down and change the channels using our voice instead of having to deal with the remote control. I’m sure there’s something like this out on the market, it’s just finding one that’s compatible with the television sets that we have is where we’re going to find our biggest challenge.

    • #13481
      David Z
      Participant

      First, some wheelchair controllers can learn & send IR commands.

      Also, there’s this: https://www.ablenetinc.com/relax

      But the price on that is absolute robbery. The parts cost less than 1/10th of price, and building & programming such a device isn’t hard for a hobbyist.

      Even easier, a (pre-made) USB IR device for your computer costs $50, can learn & send IR commands, and can be controlled any of the myriad ways you can control a computer (including via smartphone, or voice). Let me know you’d like more info.

      • #13501
        DeAnn R
        Keymaster

        Interesting options David! My wc isn’t “smart” so I doubt has the capabilities you’re referring to. Second option is definitely out of my price range.  Third option is intriguing. Does it have to be near what you’re trying to control? Can it control more than 1 device? More info would be great.

    • #13506
      Kelly Miller
      Participant

      I’m actually very interested in the 1st & 3rd versions (the wc controlling the remote & the $50 option). Can you give me links to those David?

    • #13514
      David Z
      Participant

      The device I use is the USB-UIRT; I have 2 and they work great. It used be available on Amazon, but apparently now only direct from the creator (and slightly more expensive). It can control any number of IR devices, and can either learn the commands or you can usually find them online. It can also receive IR commands to allow you to control your computer with any IR remote control. Regarding location, you should be able use USB extension cables if desired, plus you can attach 1 separate IR emitter. It’s manufactured by a one-man shop, so no guarantees, but it’s worked great for me.

      http://www.usbuirt.com/

      The software I use to control the USB-UIRT is EventGhost. It may look intimidating (it’s incredibly flexible), but it’s not that complicated: it responds to “events” with “actions”. I could give you a configuration file to start with, and talk you through what to do. The amount of work mostly depends on how many buttons/devices you want to control.

      http://www.eventghost.net/

      How do you control EventGhost? With pretty much anything. If you want to use a smartphone, you can setup an app to do so over your wifi network.

      • #13562
        DeAnn R
        Keymaster

        Very interesting. I’ll have to check it out when I get a chance.  Certainly sounds doable. I’ll certainly reach out if I can’t figure it out.

        • #13629
          David Z
          Participant

          There’s also this (also available elsewhere), which doesn’t need to be attached to a computer.

          https://www.amazon.com/Broadlink-Smart-Home-Universal-Controller/dp/B01N1HKMDW

          I have no experience with it, and the reviews are iffy. But I’d be tempted to try it myself, especially since I think I could write my own app for it that might work better, except I already have my setup working well.

        • #13668
          DeAnn R
          Keymaster

          Definitely more in my price range.  Looking at the reviews, they’re quite mixed.  I like the simplicity of it, provided the setup wouldn’t be too bad.

        • #13687
          David Z
          Participant

          Buying random electronics direct from China is fun. It’s always cheap, and half the time, it works out great! The other half of the time, it’s a mess, but you pays your money and you takes your chances.

        • #13692
          DeAnn R
          Keymaster

          Ha ha, same goes for craft supplies. Sometimes the tape is sticky, sometimes not so much.  With the electronics though you’d have to be a little more tech savvy than I am.

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