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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, 3 weeks ago by Alyssa Silva.

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    • #22376
      DeAnn R
      Keymaster

      Let’s welcome Katie Napiwocki back into the rotation of SMA News Today columnists! I not only enjoy her writing style, I can relate to what she has to say. Such as in her latest column “Peering Through the Fog of Fear.” Oftentimes I question if Spinraza is worth it. Similarly my post loading dose progress has slumped to near baseline. However I don’t have any of the negative side effects, and I still feel the benefits for me outweigh the cons. I respect Katie’s decision. As her article points out it wasn’t an easy conclusion to come to. For her this decision allows her to dictate her life, not SMA. Can you relate?

    • #22407
      Alyssa Silva
      Keymaster

      I LOVE Katie’s style of writing, and this column was no different. I’m so glad she’s back. Although I can’t relate to her experiences with Spinraza, the part where she talks about needing a break from writing about SMA in the beginning… I feel that. It’s exhausting at times.

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