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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, 4 months ago by Brianna Albers.

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      Brianna Albers
      Keymaster

      Hi everyone! Congrats on making it through another week! I thought I’d dig into the archives and pull out one of my very first columns. I use my feeding tube more often than not, but I try and eat at least one meal by mouth per day to keep those muscles from atrophying. The issue is that I don’t feel comfortable eating around friends.

      My friends love to eat, and while they know by now that I’m not going to want anything, I still feel a little left out. Food is such a big part of our culture, and I hate that I can’t participate as much as I’d like to. I’m usually fine with snacks because it’s nonchalant enough that I can pretend that it’s not a big deal. But anything more than that makes me feel weird.

      Do any of you feel self-conscious about how you eat?

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