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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 3 months ago by Alyssa Silva.

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    • #23431
      Michael Morale
      Keymaster

      Hey everyone! Hope you’re all staying safe and healthy out there. 

      Check out my latest YouTube video here. In this episode, I discuss key differences between two potential SMA treatments. The first is Roche and Genentech’s experimental therapy risdiplam, and the second is Scholar Rock’s therapy SRK-015. Both are hot topics in the SMA community right now.

      We expect the FDA to make a decision regarding risdiplam later this year. My video also addresses this subject. 

      NOTE:  Please visit our main website for more stories and information about these two therapies. You can find articles about risdiplam here, and articles about SRK-015 here. Thanks everyone! Hope you all enjoy this episode.

      Do you have any additional questions about either of these treatments? Have you discussed them with your healthcare providers?

    • #23476
      Alyssa Silva
      Keymaster

      I’ve had my eye on Scholar Rock for a long time. I really do believe that their treatment paired with either Spinraza or risdiplam is going to be a game-changer for adults with SMA. Super eager to get more information on this one!

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