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  • Columnist Writes About Existing and Emerging Treatments

    Posted by kevin-schaefer on November 8, 2019 at 10:18 am

    Happy Friday everyone! Hope you all have had a great week.

    Check out my latest column here. I wrote about existing and emerging treatments for SMA, and how surreal it all is. At times I don’t even know what to think, especially because I never gave the future of SMA much thought when I was growing up. It’s a lot of mixed emotions for me personally.

    Do any of you ever feel this way? Do you have any thoughts about future treatments?

    alyssa-silva replied 4 years, 7 months ago 3 Members · 5 Replies
  • 5 Replies
  • halsey-blocher

    Member
    November 8, 2019 at 8:49 pm

    I think this is something that we can all relate to. Growing up I assumed the cure for SMA wouldn’t be developed in my lifetime. I thought my efforts to help with research and fundraising would benefit future generations. I never imagined that I might actually get to experience those benefits for myself. It’s amazing to see how far the research has come, and leaves me believing that I actually might see the day that SMA is cured.

    • kevin-schaefer

      Member
      November 10, 2019 at 10:06 am

      Totally agree. It’s like I was brought along to all of the MDA and SMA fundraisers when I was a kid, but I never thought about the research seriously benefitting people in our generation. Back when Zolgensma got FDA-approved, I wrote another column about what these advancements mean for us. Check it out here.

  • alyssa-silva

    Member
    November 10, 2019 at 9:50 am

    I second everything Halsey said. Never in my life did I think there would be a treatment available for me. It’s absolutely incredible the strides that are being made in the SMA community— we are literally witnessing history being made.

    • kevin-schaefer

      Member
      November 10, 2019 at 12:41 pm

      It really is surreal. I’m curious too, since you started Spinraza before any of us, have you noticed any effects lately? What have your energy levels been like?

      • alyssa-silva

        Member
        November 11, 2019 at 2:58 pm

        I feel as though I may have plateaued? I’m not entirely sure. I have definitely felt gains in my respiratory function, ability to chew/swallow/smile, and even in my stamina since I started 3 years ago. But within the last year or so, I feel as though I’ve stayed the same. Which is still great— better than declining!! Still waiting on that muscle elixir though.

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