What do you think FAAN should be doing?

Posted on: Mon, 08/20/2007 - 1:58am
Momcat's picture
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Over the years I have become frustrated with FAAN. While it's a great idea to have an organization which could advocate for those with food allergies, FAAN seems reluctant to take a stand on the real issues.

I would like to see FAAN:

Advocate the use of 504 Plans for LTFA,

Make press releases correcting misinformation that appears in the media,

Stop treating the "false sense of security" argument as valid.

Advocate for peanut/nut-free airline flights.

Cathy

Posted on: Mon, 08/20/2007 - 2:32am
Greenlady's picture
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Sponsor fuether research on "highly refined" oils
Advocate better labeling for cross-contamination
Stop accepting money from the American Peanut Council (or at least fully disclose where their money comes from)
[url="http://uumor.pair.com/nutalle2/peanutallergy/Forum1/HTML/007469.html"]http://uumor.pair.com/nutalle2/peanutallergy/Forum1/HTML/007469.html[/url]

Posted on: Mon, 08/20/2007 - 2:51am
Corvallis Mom's picture
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Joined: 05/22/2001 - 09:00

Quote:
I would like to see FAAN:
Advocate the use of 504 Plans for LTFA,
Make press releases correcting misinformation that appears in the media,
Stop treating the "false sense of security" argument as valid.
Advocate for peanut/nut-free airline flights.
Yes... ALL of that.
And also treat [i]ADVOCACY WITH THE [b]GENERAL[/b] PUBLIC DIFFERENTLY THAN ADVOCACY WITHIN THE FA COMMUNITY.[/i] Because it IS different.
Particularly the 'false sense of security' thing. Maybe the general public needs a different kind of 'awareness' brought to that issue than FA people do. Teens and parents definitely need to hear a different message than they're evidently getting. So that they don't think they can tootle around without an epipen "because I don't plan on eating anything." FA people need to be hearing "Never, EVER assume that you 'can't' have a reaction anywhere, anytime." And the general public needs to understand that there are times when we NEED their help for basic safety-- not because we can't be 'bothered' to be 'more responsible' for ourselves, but because their behavior can impact us whether we like it or not.
All about 'reduce the risk.' Which for some FA people is an almost inconceivably large risk [i]all the time.[/i] [b]THAT[/b] (IMO) is what they need to be saying instead.
My personal gripe about FAAN has always been that they tend to dismiss MFA as 'oh, that's just [i]you[/i], self-diagnosing. Your doctor will tell you if you [i]really[/i] even [i]have[/i] any food allergies.' Which, of course, really stings when you've already been to one and are staring at a list of foods that includes 99% of what's in your kitchen.
Those with MFA children need to hear something other than "That's just [i]so unusual.[/i] You need to stop self-diagnosing. Most people, even children, are only allergic to ONE food."
That's fine to tell the general public, but I think that the better statement is: "Being allergic to multiple foods is rare and complicates management enormously. You need to be certain that you have the care of a physician that is a board-certified allergist. Check with AAAIA to find out more. It is particularly crucial to be certain of a food allergy diagnosis in children, whose brains and bodies have very specific nutritional needs if they are to develop properly."
Because honestly, you are never going to [i]prevent[/i] some parents from mistakenly thinking that their child is ""allergic"" to seventeen foods, including 'sugar' and 'starch.' But you can darn-tooting tell them that they might be hurting their kids by restricting their diet and that they ought to be consulting a qualified physician.... and without alienating the people who really [i]are[/i] living that MFA nightmare and desperately need some kind of support.
Then make sure that you have [i]some[/i] kind of recipe substitutions offered that don't include soy= milk. Or eggs= soy.
Hmph. (Jumping lightly down from soapbox...)

Posted on: Mon, 08/20/2007 - 3:40am
lakeswimr's picture
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Joined: 02/01/2007 - 09:00

I like FAAN and think they do a great job in general. I think they are aimed at the *majority* needs of FA people and since DS's allergies include a non-top 8 allergy they didn't provide all the info I needed to keep him safe. I would like to see more resources for those with other FAs besides top 8 and I think they should be doing some other things they aren't yet but frankly they are already overloaded with things to do. Their job is *huge*. They have limited resources and money. Diabetes gets something like several billions a year for research. FAs get in the millions.
I would like to see FAAN push to get sesame covered by the labeling law and all other foods that they already know have the frequency necessary to qualify for the law but they have told me that is so low on their priority list because of all the other things they are working to acomplish. And when they listed those things I had to agree they were more important, however, I don't think that makes my wish unimportant. Sesame is, according to one FAAN conference speaker, now the *4th* most common food allergen in the usa and I find it very frustrating that it isn't treated as such, esp given that it is as potent as peanut.
There are other things they don't seem to be doing that I wish they were but they do a lot and I"m always going to be grateful to them.
I like many of the ideas of the above posters and agree that it would be nice to see FAAN doing those things.

Posted on: Mon, 08/20/2007 - 3:43am
lakeswimr's picture
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Also, I like that they recently stated that bans might make sense in lower grades where children still touch their faces, however this makes me concerned about older children. I have EAs and in the course of a given day during peak allergy season no matter how much I try not to do so there is a good chance at least once I"m going to touch my eyes, nose or mouth. Luckily I don't have FAs or that would still make it very dangerous for me to be around those eating certain foods. So, I wish they weren't so hardline on issues and instead said things such as, "some FA people require bans." I do think for political reasons they decided to align with the peanut industry and this might have been best, actually, because a powerful industry could run a big campagn against FA rights instead of cooperating with us. I dont' know.
There are other things. I might think of some later.

Posted on: Mon, 08/20/2007 - 3:43am
Gail W's picture
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[i]What do you think FAAN should be doing?[/i]
Awesome question. I guess first and foremost, [b]I think FAAN should ask us this question [/b]via some sort of membership survey (that does not require attendance at one of thier conferences). I mean, I have been a dues paying member of FAAN for over a decade (I have also paid for my school's membership for 10 years), and my thoughts, concerns and opinions have NEVER been solicited. For an organization that claims to represent me and that is my "voice", they have never bothered to ask me what is important to me.
Secondly, even if they won't endorse certain stances, I think they have a responsibility to find out if a stance is or is not shared by their membership. Afterall, just because a position is held by the CEO and/or the board of directors doesn't necessarily mean that it is the majority opinion of those of us whom they claim to represent.
Third, like other organizations, I want FAAN to establish "position statements" on certain key topics (such as the use of 504 plans, as indicated by Cathy) and make these position statements accessible to its membership via their website. I think FAAN has a very narrow view of "advocacy" by limiting it pretty exclusively to the legislative area. "Position statements" are a different form of "advocacy" that would also benefit it's members. (I can't tell you how many phone conversations I've had with their previous "Legislative" person regading this. [img]http://uumor.pair.com/nutalle2/peanutallergy/mad.gif[/img] )
-------------------------------
ETA that I just wrote this in a thread running in SCHOOLS:
Quote:Originally posted by Gail W:
Well, after reviewing my FAAN newsletter this morning, it seems to me that FAAN believes it is the responsibility of the *parent* of the child with LTFAs. On page 3, there is a blue highlighted "Safe Food Tips" box that states,
[b][i]Safe Food Tips[/b]
Here are are some tips to help ensure that safe foods are brought to class:
*Send in safe treats for the entire class.
*Volunteer to organize the party.
*Suggest that parents contribute to a "party fund," and you volunteer to be the designated shopper.
*Suggest that all treats brought to school be packaged foods with ingredient labels.[/i]
Does that bother anyone else? While all those are certainly possible "tips", I *wish* FAAN would present the counter-balance to their "tips" by stating (remember, this is only a wish list) such ideas as:
*Secure that only *safe* treats will be allowed to be distributed in your child's classroom via a 504 plan or IEP.
*Show them FAAN's position statment supporting food-free classroom celebrations.
* Show them the link on FAAN's webite of school's that have successfully banned certain allergens from the classroom.
*Show them FAAN's model school board policy requiring all treats brought to school must be packaged foods with ingredient labels.
I mean, wouldn't it feel great to read that?
[This message has been edited by Gail W (edited August 20, 2007).]

Posted on: Mon, 08/20/2007 - 3:45am
journstep's picture
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Joined: 07/30/2007 - 09:00

Not specific to FAAN, but all food allergy organizations in general:
More acknowledgement of adults with FA, including those with adult onset.
More acknowledgement of the many whose reactions have never been, and hopefully never will be ANA do exist and do have real allergies. Although I realize this is at cross purposes to those of you dealing with LTFA, in my opinion the apparent fact that many adults with FA, (both ana and non-ana, but more non-ana) do not participate in FA organizations and forums like this, probably skews research, denies children with FA and their families adult role models, and makes it harder on adult-onset people who don't have access to more experienced adults with FA in their own lives. Maybe more adults with FA would step up with various kinds of support if there was more recognition of our needs, as well as what we can offer the FA community.
------------------
(relatively recent adult onset non-ANA TNA/inconclusive PA)

Posted on: Mon, 08/20/2007 - 3:53am
lakeswimr's picture
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I think they should get a clear guidline of how peds should handle possible FA children to peds and get info to ob gyns about possibly avoiding peanut, nuts and shellfish in ones 3rd trimster during pregnancy, esp if one has a family history of FAs.
I think all peds should know the basics about FAs and the symptoms of FAs, the signs of ana, how to treat ana, basics about testing and reliability and when to send a child to an allergist for testing or further info. They don't. Most peds don't which is a shame and FAAN could, IMO, easily help this by writing a simple informational sheet for peds and getting it published in a wide-read medical journal and also getting the word out to med schools.
The fact they haven't gotten ERs to be up to date is pretty surprising to me, too.
I think they should make it more clear, the way ana canada does, that labeling laws don't cover X-contam and therefore recommend, again the way ana canada does, that people call companies at least once.
I think they should have how to read a label cards for sesame and at minimum they should inform those with sesame and other non-top 8 allergens that label reading alone is *not* sufficient as sesame doesnt' have to be labeled. It can be labeled as 'spice' or 'natural flavor' or other and some foods that don't have sesame, spice or natural flavor have enough x-contam to cause a serious reaction. I don't like that I had to learn the above the hard way. They should have been telling me that when I called.
They should have a message board as well. I was itching to talk with other FA people for years before I found online sites.

Posted on: Mon, 08/20/2007 - 4:27am
booandbrimom's picture
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Quote:Originally posted by Gail W:
[b]I guess first and foremost, [b]I think FAAN should ask us this question [/b]via some sort of membership survey (that does not require attendance at one of thier conferences). [/b]
I'm pretty sure they just did exactly this in their last newsletter. They asked for input on what FAAN means to members and what we saw as the core mission of the organization. There was a web address for responses.
Personally, I think I get good value for my - what... - $20? but that's apparently just me.

Posted on: Mon, 08/20/2007 - 5:45am
Momcat's picture
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Quote:Originally posted by booandbrimom:
[b] Personally, I think I get good value for my - what... - $20? but that's apparently just me.[/b]
What are they doing that you find the most valuable?

Posted on: Mon, 08/20/2007 - 5:57am
nosoyforme's picture
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Joined: 08/16/2007 - 09:00

I think they should be working with the Allergists also. I think they should be working with food manufacturers more on labeling issues. I don't like the fact that companies can still use the words "flavors, natural flavors, flavoring, and spices. Why do we need to call and ask what these things are- why not list them on the label. I am allergic to soy bean oil and soy lecithin. It would be so great to have everything listed and let me decide if I want to dare to eat it. They need to be working harder on cures and the causes. What about the fact that so many processed food are made with soy bean protein, flour and oils. They would not be putting peanut flour, oil and protein in almost everything. Why soy- because it's cheap and they are making millions from the soy. I personally think soy in all the foods these days are a major contributor to the rise in food allergies.
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Allergic to all soy, all nuts, peas, beans, sunflower. Started at age 40.

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