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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, 2 voices, and was last updated 1 year ago by Rachel Markley.

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    • #19211
      Kevin Schaefer
      Keymaster

      Hey everyone, hope you’re all having a great week.

      Check out my latest column here https://smanewstoday.com/2019/06/04/zolgensma-research-advancements-adult-care-living-longer/.

      I wanted to address the news regarding Zolgensma, focusing on what it means for adults with SMA. With all of the medical advancements out there, it’s a whole new world for us. I think we need to consider what it all means for adults who are now living longer, and how we can focus on things like workplace accommodations and caregiver funding, as well as research.

      Let me know what you think. Do you have any other ideas for helping adults with SMA? What are your overall thoughts regarding Zolgensma?

    • #19772
      Rachel Markley
      Participant

      I love this post! I think we really need to consider regenerative therapies and pay attention to Zolgensma’s effect on insurance coverage of long-term care. By regenerative therapy, I mean if you or I receive Zolgensma, our neurons and muscle fibers are already dead. How do we rebuild those to see more effects?

      I also worry about Medicaid saying “well, they received gene therapy so they clearly don’t need home care. Look at those babies, they’re fine!”

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