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  • The 2018 Cure SMA Conference: An Overview

    Posted by kevin-schaefer on June 19, 2018 at 1:00 pm

    My family and I got home safely last night after a fantastic week in Dallas, Texas for the annual Cure SMA conference. Though I’m still pretty tired, it was by far the best SMA conference we’ve been to, and we’ve been going since I was a kid.

    I’ll be writing a more detailed recap of the whole trip in my next column, but for now I did want to post a few pictures and share some of the things I did there.

    The biggest takeaway for me was the sheer number of adults with SMA who attended this year. The Friday morning session for adults with SMA was so packed that we almost had to split into two groups. I knew several people there, but I also had the pleasure of meeting many others. Outside of that session, a bunch of us hung out every night at the hotel bar. Even though I just met several of these folks, it felt like we all have known each other for much longer.

    The other session I attended was the research update on Saturday morning, in which representatives from Biogen, AveXis, Cytokinetics and all of the other pharmaceutical companies working on SMA drugs presented. The only major update here was that the Cytokinetics drug Reldisemetiv has been showing positive results in its phase 2 clinical trial stage, particularly among ambulatory patients. Aside from that, I thought it was beneficial for patients such as myself to hear from researchers and doctors from these companies about the different drugs in development.

    For me though the best part of it all was just the community aspect. I loved connecting with other adults with SMA, families, caregivers and medical professionals. It went by too fast, but I’m beyond excited about all of the connections and friendships I made this week. If you have not gone to a conference before, I highly recommend going in the future if it’s feasible.

    kevin-schaefer replied 5 years, 12 months ago 1 Member · 0 Replies
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