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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 1 reply, 2 voices, and was last updated 3 weeks, 2 days ago by Alyssa Silva.

    • Author
      • #21365
        Kevin Schaefer

        Hey everyone! Hope you’re all having a great week so far.

        Check out the latest episode of the SMA News Today Podcast here. In this roundtable discussion, Michael and I talk about several recent news stories and columns. The first story we look at is about how risdiplam is enhancing the motor function of people with SMA types 2 and 3. We share our thoughts about what this could mean for adults with SMA in the future.

        We then discuss a more controversial story about AveXis putting its STRONG trial on temporary hold. Michael and I address some of the misconceptions surrounding this news, and we share our thoughts.

        Finally, we talk about a couple of our recent columns. The first is one I wrote about having a strong quality of life while living with SMA. The second is Kala’s column about how progression looks different for those of us with SMA.

        Let us know your thoughts on this episode! We’d love to hear from you all. 

      • #21377
        Alyssa Silva

        Such an informative podcast! I had heard about AveXis putting that trial on hold but wasn’t exactly sure why, so thank you for clarifying that.

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