Oh, then I don't have a strong opinion on this. I am not that psyched that there is another group with that name on FB. 

Fighting for a word is stupid. Don't we have more important things to do as a community? 


YES.

And really, if we're going to fight for a word?

Let's make that word "allergy" and shove all of the wacka-doodle "my naturopath said I can only eat artificial sweeteners on Tuesdays" crap  off of this bus.

The thing is, the entire reason why people ask questions and why the word matters to people with anaphylaxis triggers (or other life-threatening reactions, as noted) is that what they are really wondering about is wiggle room.

They want to know whether or not a "little bit" is really THAT big a deal... (or challenge, occasionally)  and really, anaphylaxis is just the way to get their attention sufficiently well to get compliance.  Well, compliance as far as they're able, I mean.

When "fatal" is part of the grab bag, it's a different kind of conversation-- and it ought to be. 

I really think, though, that there is an awful lot of room for improvement when even people who THINK of themselves as 'well-educated' on the subject make mind-boggling statements about how swelling or extreme GI distress "aren't anaphylactic" as though such things are relatively benign.   

Wow.  THAT kind of thing makes me way more concerned that the presence or lack of a particular word to describe a life-threatening allergic reaction.

Exactly.


And Lakeswimmr, FARE just needs to spend a bit of that rebranding money on SEO, and they'll come up.  Now that I think about it, I should make sure that's on my org's rebranding list . . . .

In all seriousness, though, one of the moms on that blog commented that her daughter has FPIES. A doctor made the same comment on my blog. These kids often have a much more critical reaction than anaphylaxis, yet that word doesn't cover what happens to them. Should they start a petition next that lobbies to have FPIES included in any organizational name?

I feel for FARE, having been part of branding teams many times. It's impossible to make everyone happy, find something that defensible as a trademark and domain name, find something that translates without being offensive, something that reflects equally both organizations being merged...and something that's short enough to fit on the sign at meetings.

Fighting for a word is stupid. Don't we have more important things to do as a community? 

Quote from: ajasfolks2 on February 25, 2013, 10:35:03 AM
Thought this blog was interesting reading.  The comments are important to read also.

http://overachievingbunch.blogspot.com/2013/01/whats-in-name.html

"FARE has made their decision and people can now choose to stick with the organization or choose to switch to another organization who will help and listen to what they are asking for being that the money they pay into it is supposed to help the cause."

"Team Anaphylaxis is but a small part of the allergy community. As of this moment, you have 764 likes on your Facebook page and 663 signatures on your petition."



I'd like to propose a new slogan for that group:

Analypafix...anafiliaxas...annaphyisis...JUST PUT IT BACK IN, EVEN IF WE CAN'T SPELL IT!

I don't know but I think it was a poor choice.   They don't come up when you google them.  On FB I put in FARE and another group popped up first.  Put in FAAN and they come up, though.

Four dots. Couldn't have said it better myself, unless I added a fifth dot for emphasis.

....

Yes.

This is why I stick to journal papers, regs and court decisions. Bellying up to the trough of ultimate irony is time consuming, a luxury I am not in possession of. The people here are the sane port in the storm. Whatever. FAAN had ana in its name before without me feeling oodles of support or progress on the matter I'm willing to judge on ACTIONS instead of words.

<rubs temples>


Aughhhhhh....


so much misunderstanding....



I do agree with one point that Team Anaphylaxis is trying to make.  Understanding what anaphylaxis entails IS the most important thing about allergy education/advocacy.

If it's LIFE-THREATENING, it's anaphylactic (maybe "systemic" is the better, more understandable term?) by definition.  This is the problem, really-- so many of those comments indicated an anecdote which the author first states is "non-anaphylactic" but then goes on to describe as IgE-mediated and life-threatening, multi-system....



Everyone see the problem here?  That is anaphylaxis.   AUghhhh. 

While I agree that 'avoidance' is important... this is because I already understand what anaphylaxis IS.  How it can be deadly in spite of interventions.  How important patient history is.  But the bottom line is that learning that ANY systemic reaction is a clear, ominous warning sign... that is anaphylaxis.  It can progress to death.





Anaphylaxis... it's not what you think.  Maybe "these symptoms can kill"?  Consider these things warning signs, and talk to your doctor?

Seriously-- that is the central issue to understand about food allergies.   Everything else, you've got time to argue and fuss over.  But not that-- you can't lose fluids beyond a certain rate, have no blood pressure, or go without oxygen.  Period.  Not even for "minutes."  It's an emergency in no uncertain terms.

What on earth is more important than knowing that??  This is why stroke campaigns have been SO focused on symptoms.  Because time is life-- and quality of life.    Same deal.

Thought this blog was interesting reading.  The comments are important to read also.

http://overachievingbunch.blogspot.com/2013/01/whats-in-name.html

In my opinion I don't think ana. needs to be part of their name. Most of the general public have no idea what that word even means.

I can see why it's important to some. Goodness, the fact that they put brand in quotes is almost enough to make me run the other way . . . .  Kidding, of course.

I have been through one serious rebrand where the name did not change but everything else did. And I am in the process of going through a kitchen sink rebrand right now. Everything is changing--including the name.

What I've learned is this:

1) you can't please everybody. There will be folks who object--even strongly--to whatever is chosen. Sometimes you just have to go with what your months of research and analysis have told you.

2) this is expensive. They've already done the work and gone through huge expense to
-look at rights issues
-new URL (and what that means---huge work)
-social media identities
-business cards
-stationery (when you rebrand you get rid of all your old stationery, business cards, brochures, notecards for handwritten donor thank yous--EVERYTHING
-branding standards manuals

From a financial standpoint alone, I'm wiling to let this be.  I fully support rebranding work. I think it is financially justified (and orgs hire outside branding counsel for this kind of thing).

I thought Anaphylaxis in FAAN's name was a bit cumbersome from a marketing and development perspective.

Use Allergy or Anaphylaxis but not both I'm the same breath.

So I guess I don't think they need to change their new brand.

They may want to keep allergy in the name as well as anaphylaxis in order to keep advocacy and education about EE under that umbrella. Although I prefer not to promote hearsay and 'anecdata' I have seen an increase in coverage of EE through the last year or so of FAAN newsletters and signage and literature up at Jaffe Food Allergy Institute at Sinai, enough so that it's punched through my perceptual bias as truly becoming a problem on par with anaphylaxis in the sense of being aware of it especially when I consider the hard data of side effects coming out on research into OIT and FAHF-2.

Whatever the case I'm most likely in agreement with the heart of the sentiment on FAS.