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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 7 months, 3 weeks ago by Alyssa Silva.

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    • #21725
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you all are having a great week so far. Check out the latest podcast here.

      In episode 48, Michael and I discuss the latest news regarding Roche and Genentech’s experimental therapy risdiplam. We also talk with our very own vlogger and forums moderator DeAnn Runge. DeAnn discusses the origins of her YouTube series “Dose of DeAnn.” She also explains why she shares her story of living with SMA with others.

      This is our last podcast of the year, and I’d like to thank all of our listeners out there. We couldn’t do this without your support, so thank you.

      Also, we (the moderators) will be off for the holidays. Our last official day of the year is this Friday, and we’ll be back on January 2nd. We’ll still be checking in when we can, but expect much less activity here during this hiatus.

      Thanks everyone, and happy holidays!

    • #21752
      Alyssa Silva
      Keymaster

      So sorry I couldn’t attend this podcast but thank you for always putting out such great content on this medium! Looking forward to listening to what’s in store for 2020.

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