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  • Are you attending the Cure SMA conference?

    Posted by alyssa-silva on June 19, 2025 at 11:38 am

    It’s been a minute since I’ve attended an SMA conference. I’ve actually only ever been to two of them. One was in Chicago back in 2000, I believe. And the second one was in DC in 2014. Traveling for me is tough, which is why I haven’t been to many. But the times I have gone have been so rewarding and insightful. I enjoy meeting other people in the community. It’s safe to say I’ll be experiencing some serious FOMO at the end of June. 

    Are you attending the Cure SMA conference? What are you looking forward to the most?

    JeffS replied 2 days, 5 hours ago 2 Members · 3 Replies
  • 3 Replies
  • JeffS

    Member
    July 3, 2025 at 2:42 pm

    Great experince and humbling for me!

    • alyssa-silva

      Member
      July 3, 2025 at 7:23 pm

      That’s awesome! What was your favorite part about it?

      • JeffS

        Member
        July 7, 2025 at 7:54 am

        Wow, good question… There were so many things to take in. I guess my favorite part was watching the little ones who were diagnosed before birth and received Zolgensma. One family sat with us at breakfasttheir little boy had ankle braces and was simply being a toddler, running all around, climbing on the chair, and just being a kid. As a grandfather (Poppi), Angie and I couldn’t help but smile.

        Another thing that stood out was how so many people, who are much more affected than I am, were genuinely happy to be with others who share the same condition. It boggles my mind how joyful they were. As an adult, I feel like everyone could learn something from that.

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