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I've posted many responses throughout the years but I do believe this is my "maiden thread" post!  lol

Myself & other clusterbusters are going to Washington DC next week with other rare headache disorder organizations & Migrainers with an Advocacy Group known as "The Alliance for Headache Disorder Advocacy".  I felt it was worth a shot to get some local attention for us & possibly get a few more signers to sign the HOH (Headache on the Hill) petition.


I was quite concerned that they had the camera trained on my CH side!  lol

The best part is (to me) that the reporter actually went the extra mile to get a local neurologist to be a part of the story.  I bout cried when I heard him confirm what we already know..."Very few physicians are aware of this disorder"

Any way here's another 20 seconds of cluster headache awareness in the spotlight (community of about 250,000) and that's a good thing!!!


8-) << hollywood shades borrowed from Dan!

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Great job.

You will undoubetedly hear from a lot of people. I have a good example:

A guy from Tennessee called our liquor store Monday asking for Dan. I wasn't there but Lee Ann was.

The guy on the phone asked for me and was told that I wasn't there. He said " is this Danielle?"

TO make a long story short, this guys father is 63 and has been a sufferer for 30 years. After seeing me on NatGeo he started calling liquor stores in Texas asking to speak to Dan. I'm not sure how many stores he called...like FunGuy says, Texas is a big place.

He said that his father and he work together and that his dad showed up to work wearing a hat and that he normally didn't wear hats. He was hiding a bruise or something caused from hitting his head on something during a bad attack. He asked me for help and I was able and glad to oblige.

Any kid ( he's probably in his forties ) that would go to that much trouble to help his dad is a hero in my book.

He said that he grew some mushrooms for his dad two years ago and after only one dose of "tea" his dad was pain free for two years. He figured he could find me faster than he could grow shrooms and I suppose he was right. I'm now curious how many liquor stores there are in Texas. :o

I talked to his father by phone that same day and told him about oxygen and about this site.

If the show did nothing else, it was worth the effort just for this guy :)

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I agree Dan....it's worth that one set of ears like your new friend!  Dang tenacious and like you said,

Any kid ( he's probably in his forties ) that would go to that much trouble to help his dad is a hero in my book.

Eventually I'll get the nerve to follow in your footsteps Dan...and actually speak of psilocybin!  And because I didn't mention the magic, I'm happy to report about 5 fellow buster's send a note to me with Clusterbuster's web address info! Which of course, I loved!

Thank you fellow BUSTERS!    ;)  BPOE

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  • 2 weeks later...

I know I don't post much but I would love to thank all of you who made it possible for BJ and I to go to DC and be a part of the Headache on the Hill. We meet so great new Friends and a few old ones.

It was unbelievable the info that the ppl we met in the offices didn't know and to see there reaction.

I hope we made a few ppl open their eyes and take notice. I hope to be part of it again next year and to see more cb'ers take part. It was a blast.

Thank you again for making it possible.

Love, hugs and many PF wishes to all

PS Cindy I hide from the camara there are a few like maybe 2 pic's of me lol

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