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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 0 replies, 1 voice, and was last updated 1 year, 5 months ago by SMA News Today Moderator.

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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 podcasts episodes from February 4 through February 8.

       

      February 4

      We discuss a newly launched website regarding patient education programs on gene and cell therapies. Also, SMA News Today’s Multimedia Director, Michael Morale, was recently asked to be the guest speaker at UT Southwestern Medical Center in Dallas Texas. Michael will be discussing the advantages of physical therapy while on treatment with Spinraza, and he will also give his suggestions as to what these new physical therapy students that are about to graduate with their doctorates of physical therapy can expect in the future of SMA and physical therapy.

       

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      February 6

      Michael Morale discusses how damage that marks SMA types 3 and 4 are linked to atrophy in the neck area of spinal cords. Also, Kevin Schaefer discusses a column that he wrote regarding the cost of independence that those of us with SMA face on a day-to-day basis.

       

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      February 8

      We discuss the FDA’s approval for the 6MWT (6 Minute Walk Test) as a primary goal of potential Reldesemtiv program for SMA patients. Also, SMA News Today’s Community Editor, Kevin Schaefer, discusses setting specific goals while taking physical therapy.

       

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