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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 0 replies, 1 voice, and was last updated 7 months ago by DeAnn R.

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      • #19525
        DeAnn R

        Happy Tuesday everyone!

        Check out the latest episode of Dose of DeAnn: A Glimpse Into My Life with SMA, right here. In this video, I share my thoughts on the different treatments for SMA. Some of these drugs are already available, while others are in development and in clinical trials.

        As treatments like Spinraza and Zolgensma come to the market, the face of SMA is changing day by day. As such, questions and concerns arise. These concerns include access to treatment, how SMA types are categorized, and if the standard equipment for SMA individuals is really necessary. I discuss my thoughts regarding these topics.

        What questions do you have about the state of SMA research? Are you on any active treatment?

        Please let me know your thoughts, and be sure to subscribe to the SMA News Today YouTube channel if you haven’t already.

        Thanks, and hope you all have a great week!

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