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This topic has 3 replies, 4 voices, and was last updated 1 year, 9 months ago by Halsey Blocher.

  • Author
    • #19677
      Brianna Albers

      Hi everyone! It’s been a long two weeks, but I’m finally back in Minnesota, safe and sound. I love traveling, but there’s nothing better than coming home after some time away.

      I wanted to recap the annual Cure SMA conference. This was my first conference since I started working at BioNews. (I’ve only attended one other conference in Chicago, but I honestly don’t remember much about it beyond the service dog I met and, of course, fell in love with.) I was lucky enough to receive one of the scholarships Genentech offered to adults with SMA. It really made the whole experience possible, and I’m so grateful!

      I’m really glad that we went. Admittedly, I was a little nervous. I only started interacting with the community a few years ago, and I knew I’d be a fish out of water. There are plenty of wheelchair users in the Minneapolis-St. Paul suburbs, but, in my opinion, there’s a difference between wheelchair users and SMA patients. It was strange being surrounded by people who I could easily relate to. Still, it was exactly what I needed.

      I only attended a few workshops, but honestly, I got the most out of the community. I met so many people; and seeing the different ways they pursued independence inspired me. It encouraged me to make several life changes, which I’ll be talking about in future columns, but I wanted to give y’all an update while the memories are still fresh.

      Oh! For those who struggle to be heard in noisy environments, I experimented with this little amplifier during the conference. It struggled to keep up in super noisy environments, but it allowed me to chat with people in Disneyland without screaming at the top of my lungs. I’m definitely going to invest in a higher quality one. I’ll keep y’all updated!

      Did anyone else go to the conference? What did you think? For those who didn’t attend, what would you like to see at future conferences?

    • #19694
      Kevin Schaefer

      So glad you were able to come this year! It was great to finally meet you in person.

      And yeah, I know exactly what you mean about how being around other SMA people is different than just being around other wheelchair-users. There is something special about the SMA community.

      I’m glad your voice tool worked well too. Even I was overwhelmed by the amount of people who came this year, but I’m glad you were still able to communicate. The good thing about being at an SMA conference is that there are plenty of others who have the same issue, so everyone understands.

      Sorry I missed you in the parks on the last night. Did you do any rides or anything then?

      Hope you can make it again next year! Next year will be much easier for me. My family and I have driven to Disney World many many times. It’s an easy day trip from North Carolina.

    • #19708
      Ryan Berhar

      Glad to hear it was a great experience for you. I went to the 2016 conference, and I had similar takeaways. It was so cool to not stick out like a sore thumb for once. I was also encouraged by those who have “made it”. Seeing people who were married with kids made it seem possible for me as well

    • #19712
      Halsey Blocher

      Sounds like it was a great time! It’s definitely great to be able to connect with people you can relate to! Hopefully one of these days we can all go to the same conference. It sounds like we’ve all been missing each other by a year or so. Last one I went to was 2017.

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