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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 2 replies, 2 voices, and was last updated 5 months, 3 weeks ago by Alyssa Silva.

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    • #22390
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you’re all having a great week so far. Check out the latest installment of the SMA News Today Podcast here.

      In episode 52, I talk with my coworker Luisa Palazola, a Community Manager for SMA News Today. Luisa is from Memphis, Tennessee, and she has another rare genetic condition called cystic fibrosis. During this conversation, she talks about her story and advocacy work, what she’s learned about SMA through her work here, and the upcoming event Rare Disease Day.

       

      To learn more about Spinal Muscular Atrophy, visit http://www.smanewstoday.com.

    • #22401
      DeAnn R
      Keymaster

      Great discussion! It’s easy to draw parallels between SMA & CF. Thanks for sharing your experiences Luisa. You’ve got an awesome spirit. Glad to get to know you even more with this podcast. Keep up the great work with the social media campaigns!

    • #22406
      Alyssa Silva
      Keymaster

      Luisa, you are my WCW every day. This was a great podcast, you guys! It’s amazing how we can all have different stories, yet the thread that weaves us together is the art of storytelling. 😊

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