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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 6 months, 1 week ago by Alyssa Silva.

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    • #22217
      Kevin Schaefer
      Keymaster

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

      Check out my latest column here. I wrote about the different ways that I use my voice, both in terms of my patient advocacy work and my creative outlets. Especially since I started Spinraza, my voice has become even stronger. Currently I’m looking into doing voiceover work, and seeing what other opportunities are out there.

      Does anyone here do any kind of voice or audio work? For those of you who are on Spinraza, have you noticed any changes in your voice levels/abilities since starting the treatment?

    • #22228
      Alyssa Silva
      Keymaster

      Great column Kevin! My voice has improved since taking Spinraza— like tremendously. Not only can I speak louder and more clearly, but I can also speak for longer periods of time. That being said, I’m not a huge fan of the sound of my voice, so I don’t think I’ll be doing any voice or audio work anytime soon. 😂

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