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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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      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 27 to January 31.

      January 27

      We discuss a study that suggests that regular CSF exams are urged following Spinraza treatments, to screen for injection side effects. Forums moderator DeAnn Runge has an affinity for smart home devices. However because of their price tags she has to evaluate these products and decide which will integrate with the products she already uses and if they’ll enhance her life.

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      January 29

      Forums Director Kevin Schaefer talks about trying to manage stomach issues as an individual with SMA & as usual there are great conversations going on in the SMA News Today forums, says DeAnn Runge. Discussions range from how you communicate to strangers your vulnerability to germs to talking about subscription boxes breaking up the monotony of winter and more.

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      January 31

      We discuss a study that finds adults with SMA, tend to report low prevalence of non-motor symptoms & Forums Director Kevin Schaefer reads from a Monday Motivation post in the SMA News Today Forums.

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