95 posts / 0 new
Last post
Posted on: Wed, 08/15/2007 - 12:40pm
Gail W's picture
Offline
Joined: 12/06/2001 - 09:00

Hi gvmom [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Quote:Originally posted by gvmom:
[b]Can I ask.... why is everybody all over about FAAN being on top of this? They haven't always been the best ones, or the be all and end all, when it comes to FA's.[/b]
I'll answer. For me it's because FAAN states they are the world's largest organization regarding food allergies, and [i]they [/i]put themselves out there as the 'be all and end all' for us. And they've convinced our schools and our allergists of this too.
Here is what they state as their mission:
[i][b]MISSION[/b]
To raise public awareness, to provide advocacy and education, and to advance research on behalf of all those affected by food allergies and anaphylaxis.[/i]
Regardless of the particulars in this lawsuit, this attorney stated on a nationally broadcasted program that,[i] "I am allergic to cheese" [/i]and yet questioned the seriousness of an allergic reaction to cheese by stating, [i]"I just don't know how sick you can get from a piece of cheese." . . . "Generally, allergy to cheese is lactose intolerance which gives you a stomach ache." [/i]
Well, here's an opportunity for FAAN to advocate and educate on a national level. FAAN wouldn't have to comment on anything specific regarding this case, this man's suit, or his alleged symptoms. They could simply address the fact that persons allergic to milk [i]can [/i]have severe allergic reactions, and that stating otherwise in their report is not accurate. Quick, fact-based press release regarding milk allergy.
It just irks me that they won't do such a simple act. Even at the request of their members. Shame on them again.

Posted on: Wed, 08/15/2007 - 12:46pm
Jana R's picture
Offline
Joined: 02/09/1999 - 09:00

Do we really know that FAAN hasn't done anything regarding this?
I'm sure they are pretty busy with all the folks wanting "Back to school with Food Allergies" info and to me it's waaaay more important they deal with that that a single reporter (albeit a national one)
------------------
Jana
[url="http://www.seattlefoodallergy.org"]www.seattlefoodallergy.org[/url]

Posted on: Wed, 08/15/2007 - 1:23pm
Gail W's picture
Offline
Joined: 12/06/2001 - 09:00

Good point. I'll call FAAN tomorrow and ask.
I thought they put their press releases on their website (and I didn't see one on this subject), but perhaps I'm wrong.
I don't think this would be a resource allocation issue because writing press releases isn't hugely time consuming (I used to do it in a previous job). They very probably have a template.

Posted on: Wed, 08/15/2007 - 6:16pm
gvmom's picture
Offline
Joined: 08/24/2005 - 09:00

[b]Did you watch it yet?[/b]
I've read enough to know that I don't have the stomach for it yet. I will try though this weekend.
[b]I think it's because some of us gave money to FAAN and would like to see some return on that investment. Maybe you're right. We should start supporting some other group which WILL advocate for us when the chips are down (i.e. when lawsuits are involved or due process, etc.)[/b]
I think that putting all your eggs in one basket can be a mistake sometimes. Maybe that is what something like this is supposed to be showing us. Or maybe, an incident like this will begin to require more of them in order for them to get our money.
If other groups exist out there, that are legitimate and advocate for the Food Allergic community, then it might be worth it to stop towing the company line and shift some of our support elsewhere.
[b]exactly! i was thinking even more broadly-- like some of the "go to" experts, like Sampson, Burk, Woods.. it would be great to get one of them to respond.. thoughts?[/b]
I think that would be fantastic. If I'm not mistaken, I think that there are members here who take their children to those doctors. One might think that they'd have an in with at least suggesting that they take a look and possibly issue a statement about this story and that wretched lawyer.
[b]Hi gvmom[/b]
Hi Gail. *waving hello*
[b]I'll answer. For me it's because FAAN states they are the world's largest organization regarding food allergies, and they put themselves out there as the 'be all and end all' for us. And they've convinced our schools and our allergists of this too.[/b]
And I'd argue, that they have convinced us as a community as well. (You'll have to forgive me, but I'm on a bit of an activist run.......)
If, we, as a community, also buy into what they define themselves as, buying their products, giving them money, helping them promote themselves in our efforts to further advocacy, then shouldn't we also require them to follow through in supporting, through action, their mission statement?
You gave an example which wouldn't require any sort of ethical breach to discuss that story... as far as I can tell.... and it seems as though it would be their duty to do so given their own purpose, as they have defined it. Why won't they do it, why do we accept that, and is anyone willing to do something to let FAAN know that the FA community expects them to follow through with the responsibilities they state they are taking on as representatives of our community?

Posted on: Wed, 08/15/2007 - 7:21pm
Christabelle's picture
Offline
Joined: 10/03/2004 - 09:00

I have always felt that FAAN undermines my daughter at every step, with their constant 'false sense of security' nonsense. Because of that they don't speak for me. There is some other agenda there, unseen, holding them back from full advocacy IMO.
This doesn't surprise me at all.

Posted on: Thu, 08/16/2007 - 2:06am
Gail W's picture
Offline
Joined: 12/06/2001 - 09:00

I spoke with FAAN this morning. My question to Darcy, (Member Communications), was:
[i]"What has FAAN done and what are FAAN's plans to respond to the inaccurate information regarding milk allergy that MSNBC reported in their McDonald's lawsuit story?"[/i]
(Paraphrasing) [i]"We're keeping an eye on it.. . We've spoken to them. . . We're in a rock and a hard place. . . .Can't take a position on the lawsuit. . . We sent them information regarding the difference between milk allergy and milk intolerance. "[/i]
When I pressed her as to why FAAN couldn't distinguish between the lawsuit itself and the inaccurae comments made in the broadcast, she said that it was a "Media circus", that any comments made by FAAN would be "perceived" as taking a position and that they can't endorse (or be percieved as endorsing) one way or another. I persisted, saying that FAAN could actually state that in their press release, i.e. that they are not commenting on the case itself nor making any type of endorsement regarding the case, but merely addressing the inaccurate information stated by the legal reporter.
She basically repeated the same "fine line" response, to which I responded with the same "FAAN can distinguish their position by including it in a the press release". Then she suggested that I speak with Dan, FAAN's "communications" person who would craft such a release. Before I left a message with him, I asked Darcy if she would pass along to the powers that be that it is disappointing that FAAN has not put information about this on their website. That I respected and understood that FAAN cannot comment on the lawsuit, but that it is difficult for me to see that FAAN had not made a press release correcting the misinformation stated by the reporter. I asked that she pass along that I requested that FAAN make such a press release and that FAAN post it on the website for members to see.

Posted on: Thu, 08/16/2007 - 2:34am
Momcat's picture
Offline
Joined: 03/15/2005 - 09:00

I just have one question:
WTH can't they comment on lawsuits?

Posted on: Thu, 08/16/2007 - 3:12am
saknjmom's picture
Offline
Joined: 04/02/2003 - 09:00

Maybe they don't want to appear to be supporting the lawsuit or the details of the suit.
It is pretty clear that in most of our letters and posts that we don't really care about the merits of the suit, only the inaccurate information given about the seriousness of food allergy and dairy allergy vs. lactose intolerance.
I still don't see the hurt in FAAN pointing out that their Legal Analyst was inappropriate in her tone and was spewing false information regarding food allergies.

Posted on: Thu, 08/16/2007 - 4:22am
Going Nuts's picture
Offline
Joined: 10/04/2001 - 09:00

Gail,
(waving hi!) I will contact FAAN as well. I too am very disappointed that they aren't setting the record straight on this one.
Amy

Posted on: Thu, 08/16/2007 - 5:18am
Gail W's picture
Offline
Joined: 12/06/2001 - 09:00

((waving back!)) Hi Amy! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Well, I had a 45 minute conversation with Dan who basically confirmed that FAAN doesn't want to be associated with this case because it could do more harm than good. Win the battle but lose the war. He said that the public perceives this as a frivilous suit, and that their involvement (or perceived involvement) could have negative ramifications as a result.
He did not think that they had contacted the legal analyst to educate her re the difference between milk intolerance and milk allergy. He seemed opened to doing that, but was clear that there wouldn't be anything appearing on their website. He didn't think it merited space, which is apparently limited. And definitely no press release.
The most interesting point in our lengthy conversation for me was that he stated to me exactly what irks me about FAAN,
[i] "FAAN is the voice of the food allergic in this country" [/i]
(or something very similar to that effect) to which I stated that if that was true, FAAN would be remiss in not responding to the inaccurate statements made by this analyst on a national broadcast. He seemed to agree with that, and said he'd bring forward the idea of FAAN corresponding directly to the analyst about her comment(s). I asked how members, such as myself, would know that FAAN had responded, as our representative organization. But again, he seemed pretty firm that nothing would be seen publically (i.e. press release, website) on this matter because the decision had been made that FAAN would not gain from becoming involved in this particular incident.
<> I think he heard me.
[b]If, we, as a community, also buy into what they define themselves as, buying their products, giving them money, helping them promote themselves in our efforts to further advocacy, then shouldn't we also require them to follow through in supporting, through action, their mission statement?[/b]
[img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Well said.
[b]I will contact FAAN as well. I too am very disappointed that they aren't setting the record straight on this one.[/b]
Awesome Amy!

Pages

Peanut Free Store

More Articles

There are many reasons why you may want to substitute almond flour for wheat flour in recipes. Of course, if you have a...

Are you looking for peanut-free candies as a special treat for a child with...

Do you have a child with peanut allergies and an upcoming birthday? Perhaps you'd like to bake a...

Most nut butters provide all the same benefits: an easy sandwich spread, a great dip for veggies, a fun addition to a smoothie. But not...

Do you have a sweet tooth and more specifically a chocolate craving? Those with peanut allergies must...