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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.’”


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    • #22049
      Kevin Schaefer
      Keymaster

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

      Check out the latest podcast episode here. In episode 50, Michael and I discuss updates on Roche and Genentech’s experimental therapy risdiplam. Now that this drug is under FDA-approval, we answer questions regarding its potential cost, and what kind of impact it will have on the SMA community. 

      We also talk about two of our recent columns from our main site. The first is about media representation of people with disabilities; and the second, written by parent columnist Michael Casten, is about working through life’s frustrations. Listen here, and share your thoughts in our forums.

       

      Hope you all enjoy! For more conversations and interviews, check out the podcast archives here.

      Do you have any takeaways from this episode? Do you have any questions regarding risdiplam?

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