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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 2 replies, 2 voices, and was last updated 1 month, 4 weeks ago by Kevin Schaefer.

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      • #20942
        Kevin Schaefer
        Keymaster

        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 discuss two stories involving SMA treatments. The first story is about a phase 2/3 trial that will test out higher doses of Spinraza on patients with SMA. Then, we look at how the clinical trial drug Risdiplam continues to be an effective therapy for people with SMA, according to new trial results. We discuss both of these stories in detail.

        In part two, we discuss a couple of our recent columns. One is mine about a new memoir by disability rights activist Keah Brown. Finally, we end on a hilarious note as we talk about one of Alyssa’s latest columns. She wrote about an embarrassing story from her first day of middle school, and Michael and I share some of ours as well. Enjoy.

        Do you have any takeaways from this episode? Any questions? We’d love to hear from you all!

      • #20957
        DeAnn R
        Keymaster

        It will be interesting to see if the higher dose will be safe and effective. I have to say I felt more effect from Spinraza during the loading doses and through the first maintenance dose. It stands to reason this would be the case because there would’ve been more of the drug in my system at one time. I’m guessing higher dose would be more costly, but hopefully it wouldn’t be something like double the dose double the price.

        Risdiplam is certainly intriguing. I like that since it’s an oral medication it works on a cellular level. As with many I also like that it’s not a spinal injection. With it being a daily medication it may also be a more steady result unlike the ebbs and flows many of us on Spinraza see. My concern of course is cost and pharmacy issues. One of the only reasons I’m getting Spinraza is that the University of Minnesota does buy & bill. I can’t see a regular pharmacy doing that.

        Thankfully I’ve never been sprayed, but I do have skunk stories. For some reason they do like to take refuge under ramps. My sister had to tell me the windows automatically shut if there’s a skunk around just so I could sleep with the window open. Don’t get me started on spiders!

        We could probably start a separate forum on wheelchair stories.

        • #20963
          Kevin Schaefer
          Keymaster

          I’m interested too in seeing what kind of effect the higher dosing will have on people in this study. Likewise, I felt a big boost of energy during my Spinraza loading doses. With the maintenance doses, I do feel a slight decrease in stamina when another dose approaches.

          Risdiplam is definitely promising. I just got back from a Cure SMA leadership conference in Boston, and Genentech gave a really good presentation there. Granted, they can’t say much right now about the estimated cost until they get FDA-approval, but it’ll be interesting to see where things go in the next few months.

          And lol, I want to hear these skunk and spider stories!

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