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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 3 replies, 3 voices, and was last updated 1 year, 12 months ago by DeAnn R.

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    • #12714
      Kevin Schaefer
      Keymaster

      Columnist Brianna Albers wrote a great piece this week about the struggles of doing a class presentation when you have SMA (https://smanewstoday.com/2018/06/25/sma-moving-forward-graduate-school-time-break/?amp). She goes into detail about how SMA makes it hard for her to speak and articulate, which is something I’m sure many of us can relate to. Ultimately though she shares a success story about a recent presentation she did for grad school.

      Even though I’ve always had a loud voice and am able to project well, I’ve still had plenty of times when my speech was slurred and people had trouble understanding me. Spinraza has helped with this, but still it’s an issue for a lot of people with SMA.

      For those of you who are in college, do you have this problem? Do you have to request any kind of accommodations when you are required to do a class presentation? Share your tips and experiences.

    • #12715
      Ryan Berhar
      Keymaster

      I was always able to speak well enough to do presentations, but it was still not enjoyable for me by any means. If you can’t speak well, I’d suggest requesting an alternative assignment. In my experience, teachers are pretty accommodating.

      • #12727
        Kevin Schaefer
        Keymaster

        Yeah that’s been my experience as well. It requires self-advocacy, but most teachers and professors are willing to make those accommodations if you ask.

    • #13618
      DeAnn R
      Keymaster

      This topic reminded me of the time in college when I had to give a big presentation and my foot pedal fell off as I was about to go to class.  My shoe then proceeded to fall off as I was crossing the street.  Nobody noticed my foot dangling, or at least didn’t say anything, but I was so self conscious during the entire presentation.

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