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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 2 replies, 2 voices, and was last updated 7 months, 1 week ago by Brianna Albers.

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    • #21755
      Brianna Albers
      Keymaster

      If you follow me on social media, you’ll probably have noticed that I can’t shut up about SMA My Way. I’ve been working with Genentech since early this year, and we’re finally ready for the big reveal.

      SMA My Way is sponsored by Genentech and is a collaboration with the community to benefit all people with SMA. We’ll be rolling out all sorts of content, but for right now, you can check out the splash page here. Alex from Wheelchair Rapunzel, Kevan from We Carry Kevan, and Shane and Hannah from Squirmy and Grubs have been working hard, and we’re so excited for what’s to come!

      What would you like to see from SMA My Way?

    • #21777
      Halsey Blocher
      Participant

      This is really so exciting, and I’m so glad you can finally share it! I know the secrecy has been driving you crazy! I don’t have any specific ideas off the top of my head, but if there’s any way I can help, please shoot me a message! I think it’s a really great initiative and I’m looking forward to seeing where it goes from here!

    • #21828
      Brianna Albers
      Keymaster

      Thanks, Halsey!

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