Blepharospasm Bulletin Board

Information Please
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Posted by: Linda Sue
03/08/2004, 23:41:16


Since I only joined onto this BB 2 to 3 months ago I don't know what your talking about when you refer to attending "the conference". Are these medical conferences that lay people can attend or are these conferences that are specifically held to educate people with dystonias or does each district/region set up their own conferences? Thanks!
Linda



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Re: Information Please
Re: Information Please -- Linda Sue Top of thread Archive
Posted by: June in Toronto
03/09/2004, 05:43:21


There's an annual BEBRF conference held every summer, Linda, in the USA. I'm not sure where this year's one is located but somebody will post that information for us all I'm sure. I've only gone to one (just after I was diagnosed around 1995) and it was well worth attending in Columbus, Ohio. Hubby and I met about 400 other blepharos and it was comforting to know I wasn't the only one with this strange disease. We received so much kindness and tlc there and the doctor and patient information sessionswas extremely good. I really recommend you attending if you possibly can. Last year's conference audio tapes (2003) are available as advertised in the current BEBRF newsletter. Best wishes

June in Toronto, Canada




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Re: 2004 BEBRF Conference
Re: Information Please -- Linda Sue Top of thread Archive
Posted by: Virginia in AL
03/09/2004, 07:49:03


The conference this year is August 20-22 in Birmingham, Alabama. Saturday is "scientific day" and the presentations are technical, but mostly understandable by patients (and caregivers) as well. Medical professionals attending these presentations can apply for CEUs. But the Friday afternoon/evening session and Sunday morning session are both intended for "lay persons." The majority of people attending the conference will be people diagnosed with BEB, Meige or Hemifacial Spasm, and caregivers. This is an international conference. Some states have "mini-conferences" from time to time, and districts might, but I'm not aware of any that do.

I have been to three conferences and will be at this year's (as part of the hosting committee). One of the most wonderful aspects of the conference is being able to meet other people with the same disorder. We try to round up as many people as possible from the BB and meet face to face (also for a group photo). The presentations are definitely informative and the doctors who do them are very accessible for questions. Before I had my limited myectomy, my surgeon actually told me to go to the conference and ask as many people as I could about the surgery and their experiences with it.

If you receive the newsletter from the BEBRF, you will get program and registration information. If you don't get the newsletter, you should for all the other information it includes. Contact the BEBRF and they will put you on the list.

Do consider coming to Alabama.

Virginia in Alabama (State coordinator)




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Re: Information Please
Re: Information Please -- Linda Sue Top of thread Archive
Posted by: Linda Sue
03/09/2004, 12:28:05


Thank you both for the information. I don't think I can go this year but now I can be tuned into it for the future.
Linda



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Re: Information Please
Re: Re: Information Please -- Linda Sue Top of thread Archive
Posted by: Virginia in AL
03/09/2004, 13:47:09


It will be in Salt Lake City next year.

The tapes of the conferences that June mentioned are good if you can't go (or even if you can and want to review the material.)




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Thanks for the information
Re: Re: Information Please -- Virginia in AL Top of thread Archive
Posted by: Linda Sue
03/09/2004, 17:19:15


Thank you Virgina. Salt Lake City sounds feasible. I am also doing the family geneology so I could maybe do some research while there. I may check out the tapes from last years sessions also. Linda


Modified by Linda Sue at Tue, Mar 09, 2004, 17:19:52

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