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Pots Get-together Weekend, Anyone?


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Hey Everyone,

A few of us have been PM'ing and emailing about how fun it would be to try to get as many of us with dysautonomia together as possible for a week-end of fun. We could try to find a central location, and book rooms at the same place, a reasonable but comfortable hotel. It seems that summer would probably be the easiest time for most of us to get away. I just wanted to see how much interest there would be, and then perhaps with our wonderful moderators, we could come up with a plan. Ideas, anyone?




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hey potsgirl,

I love the idea. It would give many of us something to look forward to. Maybe somewhere in the middle of the states so that all would not have to travel too far. I believe the more we could get together the better the meeting would be. If we did it by regions I think the groups would be so much smaller and many of us wouldn't be meeting one another, but if that what others wants that's fine.


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It's a nice idea, but unfortunately, there are so many of us spread out across the US, Canada, Europe and a few other places as well, such as Australia. In the past, there was a conference that NDRF put on with sponsorship from the makers of Midodrine (Proamatine at that point, by Shire Pharmaceuticals), as well as some funds from Medtronic, a maker of pacemakers that has offices not far from the NDRF headquaters in MN. The conf was in DC. Sadly, DINET does not have any corporate sponsorship, and very little in the way of savings, and no staff other than volunteers. So... that being said, maybe some "mini-gatherings" might be more likely--"mini gathering" is a name that the bug website I volunteer with uses for smaller groups getting together as opposed to a larger get together that happen maybe once a year.

Perhaps some of you could meet for dinner or something like that---since AM's are notoriously bad for nearly all of us here.


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i certainly don't want to sound like a scrooge & - as someone who has met a large number of my fellow dysautonomia-laden comrades over the years (at the NDRF conference and many other times & places) - i would certainly encourage any meetings that people might want to arrange/ coordinate on their own. but to add to what has already been said, i'll mention that - for a significant number of us on the site - long-distance travel isn't a feasible option. and of course for more than that it's a pretty major ordeal. so - for that reason as well as other factors (finances, time, etc.) - you might actually end up with more people at more regional events...not just collectively but at each one.

of course my throwing out that thought does nothing to stop or discourage anyone from organizing a nationwide or even worldwide gathering wherever with an invitation to any & all who might be able to figure out some way to get there. if there are people able to do that sort of thing - health-wise, financially, & otherwise - then more power to you.

last but not least - at the risk of telling you something you already know - there have been some meet-ups that have occurred over the years via coordination/ communication amongst site members within the same city/ state/ region. i know i met-up with folks in cleveland/ NE ohio a few years back, think that a group in NY got together, & know there have a been a few others for which i'm not remembering the location at the moment. the groups have never been huge - not the big get-together you might be envisioning (& which i'm sure WOULD be a neat happening) - but i'm pretty sure that most who have participated would give positive reviews.

it is a shame that there isn't a large-scale patient conference for dysautonomia folks these days; i know i consider myself lucky to have been at one of the ones held by NDRF years back (made possible by the fact i lived only an hour away at the time!) and at the top of my "wish list" is being able to attend a patient conference related to some of my more unique health issues (i.e. being dependent on IV nutrition) b/c the experience can be pretty incredible. hopefully someday something of the sort will be able to happen again for folks with dysautonomia but - in the meantime - i would simply encourage people to forge whatever connections they can on a smaller scale.

B) melissa

p.s. if i would ever win the big-time lottery (tough since i don't play :( ) i'd gladly sponser a gathering myself :) .

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Thanks to all who offered input! Those are very good suggestions, and hopefully someday we can acquire a sponsor and have an actual conference again. That being said, I'd like to offer an open invitation to anyone in the vicinity of Phoenix, AZ, to meet with a group of six or seven of us on May 7th. If you are interested, and I don't have your email address yet, please PM me for more details. It should be a fun time!



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