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Getting the word out


wareagle
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I can't sleep and my body is going a mile a minute..so forgive me if this is jumbled. I remember someone posting about trying to contact Oprah in hopes of getting info. out to the public. I was wondering..is there any way the folks here could put together an info. packet..you know with general info. and some personal stories..that we could send to different medias? There's TV, Radio, Magazines, and Newspapers we could target. You know, like People, Cosmo, Women's Health...the Today show..USA today, the NY times...possibilities are almost endless. It may be a waste of time..but is it something we could try? I feel it would be more successful if we all joined together to present info. instead of one person here and there trying to contact people. I know this isn't a new idea..but what do you guys think? Maybe create a printable packet that could easily be presented..instead of having to cut and paste info. from different areas. This could also be used to bring to doctors. Am I making sense..I can't tell..LOL :D

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Sorry you couldn't sleep, but sometimes that's when we have our best creative thoughts. I think it's a great idea. Maybe we could use some of the personal stories posted on this forum (with permission of course) to include in an article in the packet. Nothing gets across the concept of dealing with dysautonomia better than a personal story. In addition we could include medical facts, most current research findings and statistics along with website links for more info.

I do public relations/media coordination for a hospice organization in Florida and Alabama. I would be happy to help out with this in my spare time.

The first thing I would like to know is what the other dysautonomia, POTS, etc. foundations and agencies may already be sending to the media.

Anyway, if there's interest out there or if anyone has info, I'd be interested in pursuing this. (Like I need one more thing to do in my life! :D

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If you are interested in such a project, please do contact Michelle at the DINET email address staff@dinet.org . I'm not sure what she's already done and what's "in the works".

Nina

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This one must have slipped by me. I would love to help out too. I did write to my local news stations about chronic illness week but didn't have a lot to send them. I have also thought about writing to Sharon Osbourne (I really like her attitude about getting the word out about different group sdoing stuff for awareness). Personally, Oprah is way down on my list of people to contact, but whatever, I'll do my best to help. Let me know. My info is in here somewhere.

Blackwolf

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