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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 1 reply, 2 voices, and was last updated 2 years, 3 months ago by Kevin Schaefer.

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    • #12396
      DeAnn R
      Keymaster

      In the latest episode of Dose of DeAnn: A Glimpse Into My Life With SMA, I talk about a less-than-stellar experience that happened recently on Mother’s Day weekend.

      My family and I took a day trip to visit a quilt exhibit near my hometown. Yet what we thought was going to be a fun and relaxing day turned out to be filled with disappointment. Not only was the exhibit terribly inaccessible, but most of the other places in this town had the same problem. Every other building had steps leading to the entrances, and there were no ramps or backways I could use to get in.

      Sadly, this is still a problem in many places around the U.S. and beyond. Despite ADA laws to ensure that buildings are handicapped-accessible, many businesses fail to meet these guidelines. I’m sure everyone here can relate. Check out my video and share your tips and experiences.

      Be sure to subscribe to the SMA News Today YouTube channel so that you don’t miss an episode of this vlog, and you can also connect with DeAnn right here on the forums page.

      Can you relate to DeAnn’s frustration? Have you had issues with inaccessible buildings?

    • #12423
      Kevin Schaefer
      Keymaster

      It’s pretty ridiculous that businesses today still get away with this. I’m glad you complained.

      For me, the biggest frustration is when I’m downtown or at a restaurant, and the ramp is so far away from the handicapped spot or the entrance to the building. Why can’t they just be closer and more convenient?

      Also, my college campus was kind of a weird juxtaposition of accessible and inaccessible. A lot of the newer buildings were very accessible and had door buttons that I could use. Fortunately, the building where I had most of my classes was modern and had the accessibility requirements that I needed. On the flipside, many of the older buildings had ramps that would lead right to a step. There were accessible entrances in the back, but they were often hard to get to.

      It’s definitely become better, but accessibility is still a major issue in our country and beyond.

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