SALLY, RESEARCH BEING DONE


Posted by grace anne , Mar 29,2001,15:48   Archive
I found an opthmalogy website which has the latest ressearch being done on BEB as well as HFS and related spasm diseases. This is the third in their updates,and is called Doxil Blepharospasm Treatment Trial. This may be the same as what was referred to in the BBB posting. It says "the goal is to provide a permanent non-surgical "cure" for eyelid spasms so that patients will rarely or never require further Botox injections in their eyelids." It also says on pg 5 that "Doxil is not a "long-acting" form of Botox."
Although most of the 14 pages is how to be part of this trial study, I found it interesting that on pg 2 it says "There are two common types of blepharospasm. One type is a brain disease: essential blepharospam...." I found this interesting because I've been trying to find out if BEB is considered a disorder or a disease. I emailed the address I found there in hopes to find more info.
Whether or not this particular article will help, I'm not sure, but I still check it every now and then just to see if there is anything else new on it. I'm sure there are other websites with more info and I may have them in my favorites, but don't have time right now to research it. I will later.

grace anne in port orchard Related link: http://www/med.umn.edu/ophthamology/dbnews.html




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Re: SALLY, RESEARCH BEING DONE

Re : SALLY, RESEARCH BEING DONE --- grace anne
Posted by Sally - in - Idaho , Mar 29,2001,15:51 Top of Thread Archive
Thanks, Grace Anne. I will check it out this evening.

Sally in North Idaho




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Re: TAKE RESEARCH IDEAS TO CONFERENCE?

Re : SALLY, RESEARCH BEING DONE --- grace anne
Posted by June in Toronto (June Floyd,June in Toronto), Mar 29,2001,16:54 Top of Thread Archive
Hi Ladies and Gentlemen that are going to the Scottsdale Conference,

You had written many thoughts on what you would like to be researched:
sinusitus, florescent lights, hereditary beb, and more, I'm sure. Why not take copies of all these posts and take them with you to the conference and ask the doctors about them during a question and answer period. There will be quite a few of you going, so you could perhaps...insist on some responses!. You could leave the printed posts with one of the doctors perhaps. Another way would be forsomeone tocompile all the research ideas. It might help - who knows. I know this is done with a girl guide division here in Toronto - they annually forward comments to the administration - they started doing this in the 1960's and it is still appreciated.

Just a thought

June in Toronto




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Re: SALLY, RESEARCH BEING DONE

Re : SALLY, RESEARCH BEING DONE --- grace anne
Posted by Delaine Inman , Mar 29,2001,21:30 Top of Thread Archive
Thanks for the info, will try to read more about that. Usually a disease has a known cause and a disorder is unknown cause.



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Re: SALLY, RESEARCH BEING DONE

Re : SALLY, RESEARCH BEING DONE --- grace anne
Posted by kathy , Mar 30,2001,08:13 Top of Thread Archive
i clicked on the link and can't get anything but an advertisement. What the ??



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Re: SALLY, RESEARCH BEING DONE/Grace Anne

Re : SALLY, RESEARCH BEING DONE --- grace anne
Posted by kathy , Apr 02,2001,10:07 Top of Thread Archive
Grace Anne, i still can't pull this link up? anyone else having this problem?



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Re: SALLY, RESEARCH BEING DONE/Grace Anne

Re : Re: SALLY, RESEARCH BEING DONE/Grace Anne --- kathy
Posted by catherine pender (Catherine Pender,catherine pender), Apr 02,2001,10:12 Top of Thread Archive
I can't get into it either!



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Re: RESEARCH /Grace Anne/REAL WEBSITE

Re : Re: SALLY, RESEARCH BEING DONE/Grace Anne --- kathy
Posted by grace anne , Apr 02,2001,13:11 Top of Thread Archive
Sorry there was such a problem pulling that website up. Try it this way, which is a lot of steps to get there, but the other way didn't work.
1. Go to www.med.umn.edu/
2. Click on Research
3. Click on Departments and Speciality Areas
4. Click on Clinical Sciences
5. Click on Opthalmology
6. Click on Current Research
7. About 1/2 to 3/4 way down, there is the DOXIL BLEPHAROSPASM TREATMENT TRIAL.

Sorry about that. Hope you have better luck this time.

graceanne in port orchard




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Re: RESEARCH /Grace Anne/REAL WEBSITE

Re : Re: RESEARCH /Grace Anne/REAL WEBSITE --- grace anne
Posted by kathy , Apr 04,2001,12:00 Top of Thread Archive
thank you so much. i finally had to hve Phil help me.
it is very interesting that this research refers to BEB as a brain disease. I specifically asked the foundation before my educational talk to my church circle what to refer to it as. They were almost huffy in the reply that i call it a muscle disorder, as that did not have the connotations of the word "disease". and yet this site refers to it as one. Well, Parkinson's is located in the same part of the brain as BEB.
Alzheimers is a brain disease and my mother has it. they say they are now asking congress for more money for research for Alzheimers and to perhaps develop a vaccine or steps to arrest or halt it's development.
i wonder if there is any correlation between Beb and Alzheimers.?



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Re: RESEARCH /Grace Anne/REAL WEBSITE

Re : Re: RESEARCH /Grace Anne/REAL WEBSITE --- kathy
Posted by grace anne , Apr 05,2001,09:37 Top of Thread Archive
Kathy, it sure does make you wonder, doesn't it? I mean, about correlations to other diseases. With the memory loss that many have talked about on the BBB, it seems it might be connected with Alzheimers. But I've heard so many different diseases that it is similar to.
I also asked the research foundation and received the same - that it is a disorder. Someone had pointed out that a disease has a known cause and a disorder does not. I don't know.
Are you going to the conference this year? If you are, or if someone who is going could point blank ask, we might have a more difinitive answer.

graceanne in port orchard




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Re: SALLY, RESEARCH BEING DONE

Re : SALLY, RESEARCH BEING DONE --- grace anne
Posted by Peter Hillier , Apr 05,2001,12:19 Top of Thread Archive
There is an "L" missing from the link, should read
http://www.med.umn.edu/ophthalmology/dbnews.html
It does make one "L" of a difference!



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Re: SALLY, RESEARCH BEING DONE

Re : Re: SALLY, RESEARCH BEING DONE --- Peter Hillier
Posted by Sally - in - Idaho , Apr 05,2001,19:46 Top of Thread Archive
Thanks, Peter!! I like your sense of humor!

Sally in North Idaho




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Re: SALLY, RESEARCH BEING DONE

Re : Re: SALLY, RESEARCH BEING DONE --- Peter Hillier
Posted by grace anne , Apr 06,2001,06:24 Top of Thread Archive
Peter, sorry I copied it wrong, but I agree - you have one 'L' of a sense of humor. Loved it. Thanks

graceanne in port orchard




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