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View Poll Results: Have you seen any media that reflects epilepsy?
Yes 25 50.00%
No 24 48.00%
I avoid media 1 2.00%
Voters: 50. You may not vote on this poll

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  #61  
Old 10-25-2008, 09:14 AM
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Sometimes the best method and ways of coverage
is ... if you know Billy Joel's song "Just the way you
are" ....

The best thing is:

1) Be yourself

2) Be honest

3) Be open

4) Be straight forwarded

5) Have the facts and keep it simple and brief
(like on television - "knock off the yadda, yadda,
yadda's)

6) Following the KISS rule (not the BAND - the
"Keep It Simple Silly") - because people's attention
ARE SHORT! Bore them - you've killed them!

7) Having a PowerPoint or Placard or Poster or even a
Bookmark of "Simple Steps of Emergencies" - bookmarks
are better because people do read them far more than
they do pamphlets!

8 ) Having some "goodies", like Epilepsy Foundation's
wrist bands (believe it or not - there's tons of people
who collects and wears them from Cancer to whatever
is out there, if they can get it for free - they'll WEAR it
and support it and become interested - they're "hot items")
to Bookmarks for the bookworms! People like "useful stuff"
not paperwork - which usually ends up in the landfill anyway!
(for truth!)

PS: I know one Organization - it's hilarious, but people
actually "donated" and it really worked - on those wrist
bands - buy 1 for $2.00, or 2 for $5 or 3 for $10 or 4
for $20 or 5 for $50. (Don't try to fry your brains figuring
the math out on this one because at the END of the SIGN
is clearly marked - Please make all donations if paid by
check to XXXXXXX) They also had other items on the table
that were so cute and irresistible and fashionable! Priced
just right, but marked with donations and contributions
greatly appreciated. BOOKS - they had lots of them, NEW
and USED! Just an idea of how it worked out so well in
"education and awareness" - ranging from things for
children to adults.

9) Events Calendar - If the State has Events, it's a pure
excellent idea for exposure as well, of how they can be
reached, if on the Media - they can post it on the Station's
website along with the main website of the Specific
Organization's page as well.


While this isn't an "Exhaustive List" ...

I DO wish to imply this: While Media (Radio & Television)
may be there - it can be "LIVE AIRING" with people present!
After the Live or Taped Airing - the people who are present
can then go to the above as I posted, for example.

The reason and purpose for it all - is exposure, exposure,
and more exposure - all around, not just donations and
charitable contributions / sponsorships, awareness, but
reaching out beyond the span of horizon as well.

Indeed things DO cost money - but people love "Freebies"
(who doesn't? *grins*) - and in turn, you usually end up
with someone who are willing to contribute / donate and
even help. There are always "outsiders" who are 'bored'
and looking for something 'new to do' and looking for
something to expand their minds on; and in turn, you
gain new volunteers and activists!

There's so much more I could post on this thread but it
would turn into a book!

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  #62  
Old 10-30-2008, 08:04 AM
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Quote :
Santa is a male idol figure. The elves under him are little men. The only female figures in his general story are his wife (who's left alone a lot) and maybe one of the deer? How do you intend to allow inclusion of women in your plan? I may be wrong here, but it feels like you're going out on a limb alone dressed as a male idol.
i'm sorry i can't help myself.
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  #63  
Old 01-17-2009, 07:42 AM
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Ads on television - South Africa


For the first time South African television stations are showing an advertisement with well know people who suffer from Epilepsy. The messages is clear: Epilepsy is no reason to shut out anybody suffering from this form of medical condition.

Well done South Africa!!!
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  #64  
Old 01-17-2009, 09:44 AM
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New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

Would you like to help support this forum?
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  #65  
Old 01-17-2009, 02:49 PM
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Just absolutely AWESOME!

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  #66  
Old 01-24-2009, 07:31 PM
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Its getting better since Ted Kennedy.
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  #67  
Old 01-26-2009, 10:06 AM
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Not Enough Media


Yes, I have seen some media on epilepsy - but I don't want to respond to this poll because it sounds positive. I saw a posters/ad on the subway from Georgetown University Hospital in Washington DC. It was exciting to see the the poster, but that isn't enough.

I am very saddend that the Travolta family lost their son to a seizure, but now would be a good time for 'hollywood' to show support and get involved in epilepsy. If Jett Travolta truly did have epilepsy I am stunned and ashamed that his father did not use his stardom to begin to educate the general public as well as push for more testing in epilepsy.

Sharon
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  #68  
Old 01-26-2009, 10:18 AM
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Okay, just a few things. As the people that know me can attest, I am about as passionate an advocate for epilepsy as they come, and have given my life to the Cause. I also wonder when one of our celebrities will stand up and take action, but I don't think we should expect someone like John Travolta to do so. There are other celebrities that the EFA says are involved, but they weren't heard from when we needed them the most. Guys, do you realize the media was criticizing the Travoltas because they took their son of of meds, and tried blaming their religion? Yet, what the public does not understand is that many of us hate meds, as they are dangerous and cause nasty side effects. How come this wasn't brought up?

There is a negative stigma surrounding epilepsy in this country, and I can't blame anyone for not wanting to speak about it. Just because you are a celebrity does not make you an automatic advocate, and I think we forget that. However, for the celebrities that are being promoted as advocates. I just wish they would stand up and say something, instead of using their name or face at some event to raise money for some cure that I am not concerned about ( when I say I am not concerned, what I mean is that of course I would like to see a cure, but being realistic, I think resources could be better used in an awareness campaign so people might be able to live healthier lives, instead of living in fear of someone finding out)

I will be forcing the media to talk about epilepsy this summer, because I am trying to be involved in something great. It is my hope that it will be people like us that are posting on these sites like this that will be given an opportunity to have our voices heard, and not wait for some celebrity to speak for us.

With much respect,

Sand-A-Claus
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  #69  
Old 01-26-2009, 10:18 AM
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Bernard-
What is anti-epileptic drug?
Thank you,
Sharon
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  #70  
Old 01-26-2009, 10:20 AM
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Bernard my question was what is the actual letters a e d. Now I know, thank you.
Sharon
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  #71  
Old 01-26-2009, 10:23 AM
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Sand A Claus-
What is happening this summer? Let us all in on the secret.
Sharon
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  #72  
Old 01-26-2009, 10:30 AM
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Oh, it is no secret, because I have talked about it a lot, although I am just starting to get progress going. As many people know, I am one of the top Santa Clauses around, and I take this as a huge responsibility. I also play a sport called beach tennis, and many of us want to promote this sport through charity and good deeds. I have spoken with different Santas, and they seem up for the idea of having a Summer of Santa tour, where we raise a bunch of money for different charities ( I am speaking with the Breast Cancer Foundation later this week) We want our players to get the great feeling of playing for a Cause, and I think, if done correctly, could be a great thing. I am just looking for the right company to pull something like this off. Anyway, if this does happen, I would like to use any opportunity to get people to speak about epilepsy, and hopefully get epilepsy some front page press. The media hates us, and I am not too fond of the media. However, if it takes 100 legit Santas to raise a boatload of money for charities to get heard, then that is fine by me.
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  #73  
Old 04-15-2009, 08:38 PM
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The new issue of Newsweek has a cover page article on epilepsy. I thought the article was basic enough, but also detailed to cover the various aspects of the disorder.
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  #74  
Old 05-23-2009, 06:47 PM
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Newsweek


my husband found this article in newsweek and showed it to me. It is focused on an organization called CURE - Citizens United for Research in Epilepsy. The focus seem to focus more on kids but it is only because three mother's of epileptic children started it. Their real focus is to raise money to help find a cure for what we all deal with every day. I will soon start planning a fund raiser for them.

Last edited by Melpier; 05-23-2009 at 06:56 PM.
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  #75  
Old 05-24-2009, 10:35 AM
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greg Grunbergs site


is this: http://www.talkaboutit.org/
PLEASE BE CAREFUL! It may play havoc with photo sensitive people. But the video information is ok.

ps: anybody in Austin wanna make a video about epilepsy?

Last edited by Shelley; 05-24-2009 at 10:36 AM. Reason: clarify
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  #76  
Old 05-24-2009, 06:32 PM
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I have tried the media, Oprah. Still in contact with her. But it's getting to me now. You know ,I was harrassed by neighbors yesterday because of there lack of knowlege. I had to log every nasty thing they said about me and my son.I did not say a word. I'm moving, But not before I make a stink. Bullying.
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  #77  
Old 05-25-2009, 07:00 AM
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ugh


I don't like Oprah. If it isn't relative to her interests, she isn't touching it.
What disability has she covered over the years? Is there someone in her immediate circle that has this disability?
The only way to get Oprah to do this, is to get a very prominent celebrity to do this on her show.
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  #78  
Old 11-09-2009, 02:03 PM
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I have a friend that creates video or what you call it. I am going to ask if he is interested in doing something for epilepsy.
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