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Are There Any Pots Get -Together Events?


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We've talked about having a "convention" of sorts before, but it didn't go very far. Some of the forum members have a very hard time with travel. I do think it's a good idea, though, and perhaps we could have a large get-together of those who could travel. I think the most difficult thing about planning for something like this is the funding. We would need to pay for a place to have it, and also have money if we want to get speakers to come in....If we could think of a way to get funding, I'd be happy to help plan. Feel free to PM me.


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I'll think of some ideas, but yeah it can be like one big family reunion type of deal over a weekend and then after that we can discuss it and make it more formal. I definitely understand about travel problems, in the last 6 weeks I've been out of my home maybe 7 days total.. but hopefully some of us will feel better knowing about the event and it will still have good turn out..

One idea for now is to make a virtual event. I work in the internet space and while I've never organized a virtual conference, they are becoming very popular because they are very in expensive compared to a real one. I'll look for some software options and post them here..

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NDRF used to sponsor support groups, and they also partnered with Shire Pharamceuticals and Medtronic (pacemaker company) to put on 2 international conferences. Each was held in Washington DC. Michelle Sawicki and I attended the last one in 2002. Over the years we have discussed the idea of a convention many times, however, our organization, as it stands, does not have the financial or staff resources needed to do this at present. I used to work for a small nonprofit that put on an anual conference for 5 to 6000 people each day for 3 days--it took months of planning with several full time staff whose only jobs were to set up guest speakers, specialists, doctors, discussions and panels, agendas, etc.

I have worked on a virtual platform too--I've used BlackBoard at the university level, as well as another conferencing software called Eluminate in my professional life. People participating gave feedback that they felt that the virtual systems were convenient but very impersonal and limited by the end user's internet connection speed. I'm fortunate to have access to a trunk line at work (=very fast) and fiber optic at home, it works great for me...but for folks on DSL, satellite or dial up, it's tough. I've also been a participant in skype based conferencing...again limited by the end user's technical savvy.

Something that works better is to have a live conference, but also record and podcast/youtube selected sessions so that those who cannot travel and/or cannot financial pull off paying for attendance can download at their leisure.


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In my experience, starting off small and building on it, is usually the best way to ensure success.

My doctor and I have spoken about the idea of convening a local event that would include a speaker, in our community. I think starting off small, by working with a professional in your community who probably has access to resources like space, ability to communicate with potential attendees (patients and doctors), etc. is a good way to ensure some success.

As Nina points out, with all of our ways now to record and communicate, even something small and local could be broadcast to a larger audience, including people who have a hard time travelling.

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