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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 contains 1 reply, has 2 voices, and was last updated by  Alyssa Silva 4 days, 1 hour ago.

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    • #21218
       Michael Morale 
      Keymaster

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

      Check out the latest episode of the Morale Monologue here. Recently, Biogen Pharmaceutical’s decided to conduct a study to possibly increase the dosing amounts of Spinraza. This study will look at the effects of increasing the dosing amount for those of us who are receiving this treatment.

      I share my thoughts on this news, and what it could mean for adults receiving Spinraza. Read more about this study here.

      What are your thoughts on this study? Do you have any questions about Spinraza? 

    • #21256
       Alyssa Silva 
      Keymaster

      This is interesting and, quite honestly, very necessary to explore! I typically feel a huge decline after week 12 of my injection, so either increasing the dosage or frequency would be beneficial. I’ve heard others with SMA say this as well.

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