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    Planes, Trains, & Accessible Travel With SMA

    Talk to your doctor to determine if you or your child is fit to travel.

    Traveling with a child is never easy. Traveling with a child in a wheelchair is an extra challenge. The first time Leah flew on an airplane, she was six months old, almost a year before she was diagnosed. We have always been a traveling family and once she was diagnosed, we were both hopeful and determined that it wouldn’t hold us back.

    I have always flown with Leah by myself, just the two of us. Call me crazy; it’s OK, I am. There are some things we have learned that have made it so much easier for us.

  • This topic contains 9 replies, has 5 voices, and was last updated by  Halsey Blocher 1 month ago.

    • Author
      Posts
    • #19875
       Kevin Schaefer 
      Keymaster

      Hey everyone! Hope you all are having a great week.

      Check out my latest column here. I wrote more about my experiences at this year’s Cure SMA conference, and some of my biggest takeaways. Brianna wrote about this as well, but the thing I love most about SMA conferences is that “abnormal is normal” with the people there. No one looks awkward or out of place for using a feeding tube, needing help with eating, etc. It’s an extraordinary community to be a part of.

      Who here has been to an SMA conference before? Do you have any stories you’d like to share?

    • #19882
       Ryan Berhar 
      Keymaster

      It’s a fantastic event. Still bummed I couldn’t make it. I agree, the best part is that we actually aren’t abnormal for once.

      • #19890
         Kevin Schaefer 
        Keymaster

        Sorry you couldn’t make it this year! Hope we can finally meet in person at a future conference.

    • #19884
       Halsey Blocher 
      Participant

      Yes! The normalness of the things that usually make seem strange is awesome! It’s one of the only places where a suction can turn on every five minutes during a seminar, and no one bats an eye!

      • #19891
         Kevin Schaefer 
        Keymaster

        Right! What was the last conference you went to?

        • #19901
           Halsey Blocher 
          Participant

          The last one we went to was Disney World in 2017.

    • #19888
       DeAnn R 
      Keymaster

      Great pictures by the way. I’ve never been to a conference. Guessing it would be like you suggest not as informational but more social. I probably would still feel awkward as I’m not a social butterfly, but I can see how at least the awkwardness of my disability wouldn’t be an issue. Flying is out, so it would have to be relatively close for me to even consider it. Where all have you been to the conferences?

      • #19892
         Kevin Schaefer 
        Keymaster

        Thanks!

        I will say that there are plenty of introverts who go to the conference. I think you’d get a lot out of it.

        Regarding location, it used to be in more locations. We’ve had it in Chicago, Kansas City, Philadelphia, Dallas, etc. Now however, the conference is so big that it pretty much just alternates between Disneyland and Disney World. They’re about the only places in the U.S. that can accommodate so many wheelchairs, families, and researchers.

    • #19889
       Mike B 
      Participant

      While there is much negativity and divisiveness in the news and our daily lives, for me the SMA conferences display and bring out the positives and best of humanity. A unifying collective spirit towards common goals is something I find uplifting. I was hesitant to attend my first conference back in 2015, but now have attended 3 of the last 4 and plan to attend in Orlando in 2020.

      • #19893
         Kevin Schaefer 
        Keymaster

        Totally agree Mike! And yeah, looking forward to seeing you next year!

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