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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 5 months, 2 weeks ago by Alyssa Silva.

  • Author
    • #22474
      Kevin Schaefer

      Hey everyone! Hope you’re all having a great week so far.

      Check out my latest column here. I wrote about the upcoming Rare Disease Day, and what I think of when it comes to the word “rare.” Let me know your thoughts on it here.

      What does Rare Disease Day mean to you? Do you participate in any community events or fundraisers for it?

    • #22479
      Alyssa Silva

      Great points in your column, Kevin. I actually linked it in mine that will be published on Friday.

      To me, Rare Disease Day means taking the opportunity to have our voices amplified on the importance of educating others about rare diseases. It means celebrating the qualities that make us rare. And, it means honoring the community that makes us feel less alone in our rarities. Other than writing about it— here and on social media— I don’t participate in any events or anything like that.

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