SMA News & Perspectives – Weekly Recap (Jan 20 – Jan 24)

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      SMA News Today forums moderators and contributors have been joining forces to create exclusive audio content for the SMA community. Here are the podcast episodes from January 20 to January 24.

      January 20

      We discuss a US real-world study, that claims that Spinraza stabilizes or improves motor function in older SMA patients. Also, when you have a disease that’s considered the number one genetic killer of infants, getting old doesn’t cross your mind that often. DeAnn talks about the reality of aging parents and how it’s made her become self-reliant as she’s gotten older.

      Are you interested in learning more about the spinal muscular atrophy? Please visit



      January 22

      Go to our forums:

      Forums Director Kevin Schaefer recounts the story of his adventures in
      Philadelphia, and talks about what it means to be rare and resilient. Also, on the SMA News Today forums there’s new content posted on a daily basis and virtually no topic is off limits. Recently SPC’s and other options to make going to the bathroom easier were talked about. Other topics included taking advantage of opportunities, the 2020 Cure SMA conference and the International Day of Acceptance.



      January 24

      We discuss the HHS Secretary, Alex Azar, touts the White House efforts to cure rare diseases & Forums Director Kevin Schaefer talks about taking advantage of new opportunities when you have SMA.

      Are you interested in learning more about the spinal muscular atrophy? Please visit

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