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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 2 years, 2 months ago by Kevin Schaefer.

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      Kevin Schaefer
      Keymaster

      I’ve written previously about the Vest Airway Clearance System, and how it’s helped me in recent years combat respiratory issues. In conjunction with the Cough Assist machine, this device can do wonders for people with SMA.

      This weekend I actually met a young woman with Cystic Fibrosis while I was at a friend’s wedding. One of the things we had in common is that both of us use the Vest. This device was actually originally developed for Cystic Fibrosis patients, so it was a cool connection. It’s always fun meeting someone with a medical condition/perspective and not at a medical event lol.

      My question for those of you who use the vest is what you like to do while you’re doing a session. For instance I listen to music and podcasts on my Echo Show or watch tv. That woman and I both agreed that vest sessions, while time-consuming, are actually pretty relaxing.

      What about you all? Are there any favorite activities you do to pass the time on the vest?

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