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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 1 month, 1 week ago by Kevin Schaefer.

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      • #21117
        Scott Inouye
        Participant

        My granddaughter is 3 yrs old type 2 and was diagnosed shortly after Spinraza was approved. She has had several treatments now and has seen significant gains. With new drugs being approved and studied, is there anyone looking at these in combination with Spinraza? I am in the r/d field so I have been doing my own investigating but so far have come up short of information regarding this.

      • #21125
        Kevin Schaefer
        Keymaster

        Hey Scott, thanks for asking this. See Michael’s comment on your previous post, but I’d also recommend listening to the SMA News Today Podcast. We’ve addressed this topic there before, and I’m sure we’ll have more news to talk about in the coming months.

        Like Michael said, it is all speculation at this point, but I do think pharmaceutical companies are looking into some sort of a combined therapy. For me personally, I’m content with Spinraza at the moment. But it will be interesting to see what kind of developments happen with Risdiplam and other therapies.

        Keep us updated on your granddaughter!

        Best,

        Kevin

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