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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 1 reply, 1 voice, and was last updated 2 months, 3 weeks ago by Alyssa Silva.

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    • #23597
      Kevin Schaefer
      Keymaster

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

      Check out my latest column here. I wrote about experiencing pre-Spinraza injection fatigue, which we’ve talked about here before. I go in today for my latest injection, and my body is definitely ready for it. It’ll be nice to get a good energy boost.

      Do you all also feel fatigue the closer you get to an injection? How are your energy levels overall?

    • #23612
      Alyssa Silva
      Keymaster

      Thanks for sharing your experience, Kevin. I feel fatigued as well when I’m approaching my next dose— typically around the 12-week mark. I was a month late for my most recent dose due to the pandemic, and it was honestly scary how weak my body was. I know Spinraza helps, but sometimes I forget how much of a difference it actually makes because I’m so used to it. Needless to say, this past month was a huge eye-opener for me.

      Hope all goes well for you today!

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