Ehlers-Danlos National Foundation 2008 Conference in Houston
I just got back yesterday (late afternoon) from Houston where I attended the Ehlers-Danlos National Foundation 2008 Conference. I will be posting some of my notes as I have time and energy. I have a lot of the power point presentations that I can email to folks who want them. I really should ask the presenters for permission before posting them on the internet in a place where the whole world can get to them, you know. But you can email me at [my first name] AT christinasbookshelf DOT com--a little riddle for you to solve to try to keep the spammers out of my hair. Please include when you were diagnosed, why the doctor diagnosed you (based on what symptoms), and what your main symptoms are briefly [I know, I know, our medical histories could fill a 1000 pages each], and--ooooooh, list out your helpful hints for dealing with EDS problems--so I can weed out non-EDSers who just want to waste my time and who knows what they would do with the info. I will post anyone's helpful EDS hints--hints like using PenAgains and sleeping inside a nest of pillows to keep anything and everything in the right place. There were 2 sessions that had lots of practical tips, and I will be posting that info ASAP, because that is the stuff I am sure you would most like to learn about.
I had a GREAT time at the conference and I hope that those of you who also went to the conference get some good rest!
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Ehlers-Danlos Syndrome
5 comments:
Hi Christina,
I am so happy that you had such a great time at the EDNF Learning Conference. Please know that you DO NOT have our permission to post any powerpoints from sessions in Houston. The speakers were very clear that they did not want to be recorded or have their materials photographed. If you have any questions please contact me.
Michele Darwin, EDNF Board Chair
I am a fellow EDS-er and didn't even know that there was a conference. Granted, I am in New England and wouldn't have been able to make it... but still. That's awesome. I will be emailing you!
Yes, I agree that permission must be given by the presenter before the power point is published on the Net. But I can't figure out why I would need the EDNF's permission, since it isn't their info.
And not all of the speakers said they didn't want the info shared. I know that Drs. McDonnell and Francomano do not want their data published on the Net, but other presenters have encouraged sharing. (I do need to get that permission in writing/electrons first as a CYA, I suppose.)
Testy Tiger,
Next conference will be heavily promoted by me. I thought all the EDSers out on the Web had heard through the grapevine.
I am hoping that the next conference will be in a cheaper locale, so people won't have to pay as much. (Though Houston is a whole lot cheaper than New York and LA, the next 2 largest cities in the US.) For as much as the Renaissance claims to be a luxury/upscale hotel, their bellhops and valet parking staff was incredibly lazy and impolite compared to where I stayed (Hotel Zaza) too. I don't think that the cash outlay was equal to the service. (And I did stay in the Renaissance at the previous conference. The rooms are decent [though they can be noisy if you are near the elevator or on a floor with partiers], but not what I expect for upscale.)
There were some good deals on airfares on Southwest. I think I will travel more with them in the future, since the coach seats are leather and there is more than enough legroom. (But I will try hard to bring my own food. All they serve are peanuts and pretzels (yuck!), even over the lunch hour!)
I quite disagree. It IS the foundation's information to control; contracts were issued that the foundation is legally bound to honor. The entire event happened solely because of the foundation and its volunteers. Please do not dishonor all their work by assuming that, as a guest, you have intellectual property rights to what was said.
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