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FunGuy

2014 Conference - Nashville - details

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Just registered my hubby.  It is going to be great for him and Adam.  His nick name is papa smurf.  That should tell you something, hehe.  Can't wait to share this time with all of you.  We are arriving on the 17th, hoping to find some music that night.  Hugs to all.

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Looking forward to seeing a lot of old friends and meeting a lot of new friends.

It's already guaranteed to be larger than last year and we have a month to go!!

If anyone is thinking about driving and maybe wants to meet up and drive with other CBers, please post here.

It's not a bad drive from the Chicago area.

BobW

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Sadly like DD and a few others, I have to cancel as something has come up last minute.

I have a hotel reservation I think I need to cancel today unless Alleyoop wants it since he was going to stay with me.  (BIG sorry on that).  Sometimes life gets away from us.  If Alleyoop doesn't want it I can xfer to someone else, or cancel if needed.  :(

I have been looking forward to the conference all year and am seriously bummed I have to cancel. :(

J

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Damn!  Guess everyone is too busy havin fun to post any pics!!!

DD

DD.....

I had to cancel at the last minute for family reasons. I usually would post up more pics than people wanted to look at. I hate I can't do that this year. Hopefully next year I'll be able to once again post a few for those that can't attend.

B

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OK, well let's add Racer1 onto the long list of luminaries who've had to cancel at the last minute, DANG.

Fortunately it's still record attendance, and day 1 has been great and energizing. Well it was for those not on the receiving end of some CH hits, as THREE people in close proximity to me were as I sat during presentations.  :o

Dr. McGeeney says the potential new treatment for CH he's most excited about is the anti-CGRP antibodies that pharma is racing to develop. Well that's the way I remember that part anyway - anyone please correct anything I may have mangled there.

BB subbed for Bill on the O2 breakout and did a fantastic job. Here's one idea I got from it - staying on 4-6 LPM with a nasal canula, and sleeping with it on, after a high flow abort of a high cycle wakeup hit, can potentially keep that next hit from coming back an hour or so later.

I didn't notice anyone stepping in for Racer1 in the photo snapping dept.

This up to the minute update from your conference correspondent BloggerMcJeebs.  :D

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Dr. McGeeney says the potential new treatment for CH he's most excited about is the anti-CGRP antibodies that pharma is racing to develop.
  Here's some info about that.  I assume that if our good friend Dr. McGeeney is excited about it, it's because it might work for CH too.  http://migraine.com/pro/calcitonin-gene-related-peptide-cgrp-prevention-migraine-positive-phase-ii-results-two-new-studies/

Since these are both Stage II trials, it might be helpful to have a sense of the trial process.  That is described here: http://www.pfizer.com/research/clinical_trials/phases_of_development  (I know there are also subsets within the stages (IIa, IIb, etc.).)  I am totally just guessing here based on a little experience, and I know others will correct me, but I am estimating that the time from where those drugs are now to the time they come to market (assuming that the tests continue to show effectiveness and safety) would be 18 months - two years.  I suppose people with CH would not be eligible to participate in the trials (only people with only migraines).

Looking forward to learning more.  Thanks, Jeebs!

jeebstyping_zps19e21251.jpg

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As you mention sleeping with low levels of o2 I thought back to my previous wish. O2 pumping into the house like they say the casinos do. Set up in my bedroom would be great. Sorry, rambling. Enjoy the conference and please keep updating. Thanks jeebs

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Day 2:

LORDY, 'twas as inspiring as all git out!

Bob Wold mentioned in closing 4 of his favorite things that had transpired. 2 of those that I remember are these announcements:

Personal note: I was fortunate to connect with a whole lotta CH'ers and supporters and am beyond grateful for that experience. :) Undoubtedly there are rowdy headbanging conference folk doing it up with some saturday night revelry as I type this.  8-)

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If anyone missed out check out my twitter account I live tweeted the whole thing except the second half of Day 2 I got hit hard and passed out.

https://twitter.com/mff181

(My tweets got a lot of coverage well over 300 notifications when I got home from people who interacted with me about CBNash14!)

I will also be posting about each day of the event already done 2 articles on it for my blog which you can find a link to below. I will have another article out on Day 3 later today and that will be the final one wto wrap up my coverage of #CBNash14!

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No problem Tony I'm glad to contribute in some small way with donations and coverage of CH related events. I really enjoyed hearing from Dr McGeeney he was an inspiration as well as Dr. Fadiman both of whom I will be in contact with as I delve into the world of busting and how it affects my vasculitides/migraines/neuropathy as well.

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