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Posted by Bennie Sue ( on June 30, 2000 at 14:02:28:

Hi All,

While you are looking up hospital information for Donna how about jotting down the name of your local newspaper and its address or URL, email address, or fax number and sending it along to me? Also the address of local talk shows, medical societies - use your imagination - you might suggest something we have overlooked.

While we plan to contact the syndicated media for national coverage (they have not been very cooperative in the past), we can also get some local attention by contacting people in our own areas. For example,
my county medical society sponsors weekly newspaper articles by local doctors about various ailments. I have sent them a packet containing a newsletter, brochure, and a cover letter requesting an article on CH. No response yet, but I am hoping to hear from them.

I didn't know about Donna's CH Awareness Week at that time, but it is such a good idea! We can grab attention with that!

The poverty-striken Education, Liaison and Media Committees will do our best to contact the people you suggest. It will save us hours of time doing research if you will provide some contact points for us.

Also, I believe there is a plan to put a sample cover letter on the OUCH Web site. Anyone of us who is willing could print this out and send it to local media and organizations that might use it for our benefit.

Sooner or later we will get the word about CH out to the world. But it will require a lot of effort and cooperation. Picture a day when the mention of CH does not trigger the standard responses we are so tired of hearing.

Perhaps your neurologist or GP or emergency personnel would read such an article in his or her local paper - no avenue for education and publicity should be overlooked. Maybe your boss would believe what he read or heard from a source other than yourself.
Even family and friends might pay more attention to something heard or read. People seem to be impressed by the media - for some reason they command more respect than that accorded a struggling organization such as OUCH with only 90 members, even if we are the greatest people around.

We are working with a deadline now. These media people need to know that Cluster Headache Awareness Week is coming on August 14 so that they can plan their programs or articles to coincide with this.

Thank you all for your help.

Bennie Sue

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