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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, 1 voice, and was last updated 6 months ago by Kevin Schaefer.

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      • #19837
        Kevin Schaefer
        Keymaster

        Happy Tuesday everyone!

        Check out the latest episode of the SMA News Today Podcast here. Michael and I talk about updates regarding SMA therapies Spinraza and Reldesemtiv in the news section. We then discuss one of Kala Godin’s recent columns, “Preparing for the Plastic Apocalypse”.

         

        Also, columnist Brianna Albers joins us on this episode. She and I share our experiences from the 2019 Cure SMA conference, which took place in Anaheim, California. Plus, we talk about visiting the new Star Wars theme park.

        I hope you all enjoy this episode. Please let me know your thoughts in the comments, and if you have any questions. Thanks everyone, and have a great day!

      • #19894
        Kevin Schaefer
        Keymaster

        Quick correction: I said in the episode that Reldesemtiv was developed by Genentech. It was developed by Cytokinetics, and Risdiplam was developed by Genentech. My bad! Journalists still make mistakes, but I just wanted to correct myself. Thanks!

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