Tagged: 2019 Cure SMA conference, Adults With SMA, community
This topic has 9 replies, 5 voices, and was last updated 4 months, 3 weeks ago by Halsey Blocher.
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July 17, 2019 at 3:00 pm #19875
Kevin Schaefer
KeymasterHey 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?
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July 17, 2019 at 9:28 pm #19882
Ryan Berhar
ParticipantIt’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.
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July 18, 2019 at 12:44 pm #19890
Kevin Schaefer
KeymasterSorry you couldn’t make it this year! Hope we can finally meet in person at a future conference.
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July 17, 2019 at 9:34 pm #19884
Halsey Blocher
ParticipantYes! 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!
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July 18, 2019 at 12:49 pm #19891
Kevin Schaefer
KeymasterRight! What was the last conference you went to?
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July 18, 2019 at 8:40 pm #19901
Halsey Blocher
ParticipantThe last one we went to was Disney World in 2017.
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July 18, 2019 at 10:48 am #19888
DeAnn R
KeymasterGreat 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?
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July 18, 2019 at 1:23 pm #19892
Kevin Schaefer
KeymasterThanks!
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.
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July 18, 2019 at 12:35 pm #19889
Mike B
ParticipantWhile 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.
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July 18, 2019 at 1:27 pm #19893
Kevin Schaefer
KeymasterTotally agree Mike! And yeah, looking forward to seeing you next year!
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