Publicity for BEB


Posted by Lyn Patterson , Jul 21,2001,03:06   Archive
Hi Everybody

Was just thinking, for when I get started on doing something about publicizing BEB locally, as most people have never heard of it, does anyone know of anyone FAMOUS who has it , such as a movie star. This always seems to get publicity if it is someone that people have heard of. If the person down the street has it, who cares? If a famous movie star has it, suddenly its of monumental interest to all !!
Just a thought.

Lyn




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Re: Publicity for BEB

Re : Publicity for BEB --- Lyn Patterson
Posted by June in Toronto (June Floyd,June in Toronto), Jul 21,2001,09:16 Top of Thread Archive
Hi Lyn, don't know a movie star with beb/dystonia. But here in Canada we have Lynn Johnston, cartoonist for the "For Better For Worse" comic strip and writer of 22 books - she has cervical torticollis. She did a bnefit concert this past May for our Dystonia support group in Toronto - a first for us. We didn't make research funds as we had hoped to on the concert, but did create a lot of awareness.

We are also very proud of the fact that one of our support group members, who teaches at a local collegiate, has permission to teach part of her civics and politics course on dystonia in an ongoing curriculum basis. That means about 150 students each year. They participated, for the first time, in our annual walk-a-thon, this year, making banners, contacting government officials and businesses for support and more. 150 students and their families learning about dystonia each year is a good start to awareness.

I admit a movie star could help a lot!

June in Toronto




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Re: Publicity for BEB

Re : Re: Publicity for BEB --- June in Toronto
Posted by kathy , Jul 23,2001,12:17 Top of Thread Archive
i think it would be extremely difficult for a movie star to admit to the public that they had BEB.



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Re: Publicity for BEB

Re : Re: Publicity for BEB --- kathy
Posted by June in Toronto (June Floyd,June in Toronto), Jul 23,2001,12:22 Top of Thread Archive
You are right-on there Kathy - can't imagine one being in front of all those lights - oh the pain just at the thought of it!

June in Toronto who attended a wedding a week ago and had to leave the reception early because of the professional video light being used (couldn't get away from it - it even reflected off windows and seemed to aim directly at me!)




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Re: Publicity for BEB

Re : Publicity for BEB --- Lyn Patterson
Posted by Shirley-Arkansas-USA , Jul 22,2001,12:02 Top of Thread Archive
Hi Lyn,
That was brought up at the last conference. We don't seem to have anyone really famous here in the US with Blepharospasm (that has been diagnosed). You're so right about it getting more publicity for the disorder.

Shirley in AR.




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