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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 1 reply, 1 voice, and was last updated 2 months, 1 week ago by Alyssa Silva.

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    • #23728
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you all are staying safe and healthy.

      So since 2020 has been a constant stream of uncertainty and bombshell news stories, we’ve all had to adapt to a new normal. Originally, I had a bunch of plans for this summer. I was planning on the Cure SMA conference in Orlando, a Comic-Con out of town, and regular outings with friends and family.

      Obviously, none of those in-person events are happening now. The SMA conference will be virtual this year, but pop-culture conventions are canceled. It is hard for me, given that I’m an extrovert. I’m extremely grateful to be healthy, employed, and safe with my family, but I yearn for in-person social interaction. Even though places are reopening, it’ll be a while before those of us in the SMA community feel safe to go out.

      Given that the pandemic has forced me to revise my summer plans, here are some ways I’m coping.

      Virtual Movie and Game Nights: Since movie theaters are still closed, I’ve enjoyed doing virtual watch parties with friends. This has been a great alternative, and there are several good apps for this. I prefer Scener, as it allows you to do video chats with the people you’re watching with. Game nights are also easy to do virtually. I just did one today with coworkers, and I’ve been playing virtual trivia with friends from college.

      Takeout and Curbside Delivery: Another thing I really miss is eating out with friends and family. Before the pandemic hit, I’d go to restaurants at least once or twice a week. However, I have been doing takeout and delivery on a regular basis, and I enjoy eating food from my favorite restaurants at home with my family. Sure it’s not the same as going there and having that experience, but I’m happy to still support those places. The same goes for doing online orders from my local comic shop.

      Reading/Decompressing: I really related to Alyssa’s latest column about yearning to disconnect from technology, while also being dependent on it to compensate for physical limitations. Like her, I would go out with friends or go to coffee shops to get away from my phone and laptop. It’s tough now, because I depend on those devices for both work and socializing. Nonetheless, I simply have to take screen breaks. Whether it’s through reading physical books, or just spending time outside, I need that time to decompress.

      What about you all? Do you have any strategies for making the most of this season?

    • #23744
      Alyssa Silva
      Keymaster

      I think getting outside is going to play a huge factor in making the most of what we’ve been given. I also think it’s important to remind ourselves that all of this is out of our control. We’re all in similar boats in that none of us know what’s going to happen next. And that’s OK. If anything, SMA has prepared us to be really adaptable human beings and we can use that to our advantage during a time like this. To me, that’s an effective coping strategy.

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