FAAN

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Maybe it's just me, but I recently stumbled upon a disclosure statement for nonprofits and found FAAN (Food Alerlgy Network), and was startled beyond belief to discover that Anne Munox-furlong and her husband, Terry, each make more than $125,000 per year DEDUCTED FROM DONATIONS!!!! Am I an idiot, or is this outrageous? For everyone who has ever sent in a $10 check that pinched a bit but seemed destined for good things, is this out of the question? GAAAAHHHHH!!!!!

On Jan 1, 2002

Rue,, I hear what your saying. It does seem kinda outrageous. But, when you think of all the good they have done and continue to do for Food Allergy sufferers it's also a difficult question to answer.

I would wonder how they came up with that particular sum for each of them. I wasn't aware that her husband is involved as well.

Remember the flap about the Execs at United Way? If I remember correctly, not only were they collecting huge salaries, but flying in private jets and staying in luxury hotels!etc. All at the expense of donors. Many people haven't felt the same about them since, but people do forget with time.

This is a controversial subject. Some believe it is too much ($250,000 a yr) some think its not enough. But I agree it makes you feel funny that their salary comes from OUR donations.

Have a great New Year TLSMOM

On Jan 1, 2002

I am not sure if the salary is out of line considering where they live (DC) etc. But there are 3 reasons why I chose not to renew my membership. 1. You have to pay for EVERYTHING, every bit of information it feels like you have to pay for. Ontop of the membership fee. 2. The stance on peanut bans in the schools. It feels like their way or no way, that they are our voice. If we elected them to be our voice would they listen to how many parents want bans? 3. The information here is more valuable to me

On Jan 1, 2002

I have a membership, and to be honest, I haven't gotten much for spending $30.00. Don't get me wrong, I greatly appreciate all that they do, but I pay less than that for membership to Mothers of Asthmatics and I get a lot helpful things from them. I haven't decided if I will be renewing my membership with FAAN.

Liz

On Jan 1, 2002

I have never joined FAAN due to the cost of $30 membership and having to pay for everything else. My daughters have a growth disorder and we are members of the MAGIC Foundation - yearly dues $25 and we are provided with a great deal of info, networking opportunties, etc. Also, MAGIC has an annual convention every year for the families and our cost is $75 plus lodging and a few meals. I looked into attending the FAAN convention and was horrified by the cost.

I have found more helpful info from this website and the Food Allergy support group we have in our town, therefore I won't be paying FAAN $30 this year.

On Jan 2, 2002

Well, I`m pretty surprised and disappointed about the $125,000 per year each, but FAAN may have saved my daughter`s life. By this I mean, they developed the Epipen trainer and their video "It Only Takes One Bite" was a big help to me for training everyone from babysitters to preschool teachers to elementary school teachers to parents of my daughter`s friends if she is going on a playdate. In fact, I won`t let anyone watch her if they have not seen the video. I know mothers who take about two minutes to show the playdate mother the Epipen and then place their child`s life in the other mother`s hands for a couple of hours for a playdate. The other mother has no idea what to watch for, how to prevent a reaction, or even WHEN to use the Epipen. They helped me countless times when I needed to know about food allergy and the law. Chris at FAAN referred me to the right place when I was subjected to disability harassment at my daughter`s school. I know so many people who tolerate harassment due to food allergies and don`t know it is against the law. When my daughter`s preschool gave me flack about her Epipen, and the director told me at least once a week that I should be grateful to her for accepting my daughter with her Epipen, FAAN referred me to the Justice Department and told me about the La Petite case. There was a $55,000 settlement when a preschool refused to learn how to use an Epipen for a child. I photocopied the settlement (it`s public record), gave it to the preschool director, and said if you want to kick her out go right ahead and here is what will happen. All of the sudden, she acted like my best friend, and she never brought up the Epipen again. Terry Furlong, Ann`s husband, spent atleast forty minutes on the phone with me when we wanted to fly, and went over each airline`s policy on peanut-free flights. And lastly, and probably the most important, he sent me two articles. One discussed the incidence of airborne reactions on airplanes when the PA passenger doesn`t eat the peanuts, but the other passengers do. I used that information to get my daughter`s classroom to go peanut free. Without the article, they wouldn`t have understood that by other children eating peanuts they were placing my daughter at risk. The other article, discussed 32 deaths from anaphylaxis and why they happened. That information could save a person`s life.

On Jan 2, 2002

Careful Mom--do you happen to have the articles on flying with pa--I'm considering Jake (14 mo.) on an international flight with US Air in February...

On Jan 2, 2002

Just my opinion, I am not a member of FAAN, I am Canadian and am careful who I choose to send money to, and for what cause. I think the good coming from any organization to benefit others is worth the money they receive. What degrees do they have, they could have been something else in life making that kind of money anyway. So, if were going to justify the making of big money, maybe the Sultan of Brunei can tell me why he needs a home that has 1,788 rooms? What does he do to benefit society?

On Jan 2, 2002

Babyjakesmom, the article on flying with PA had to do with people having airborne reactions from peanuts without actually eating the peanuts. As far as who serve peanuts and who will give a peanut free flight, Terry told me that US Air was about to stop serving them. This conversation was at least six months ago, so by now they have probably stopped. That would solve the problem. However, if that is not the case, we had very good experiences with Northwest and Southwest. Southwest when you make the reservation, you just tell them, and they will get all the peanuts off the airplane before you board. Southwest does let you know that it is still possible another passenger may bring peanuts on board. Northwest has a special phone number for peanut allergic passengers. It asks for name, flight number, etc, and they send you a letter about making the flight peanut free. Northwest will even make an announcement once everyone is on board asking that if passengers brought peanuts please do not open them as there is a peanut allergic passenger on board. Since I got my computer, what I have found helpful was each airline has a website. I click on "contact us" and email their customer service department asking about their peanut policy. They usually email back withing a couple of days. That way everything is in writing and you get someone who knows the answers. At the reservation number, there are hundreds of people who take the calls and what they say is sometimes reliable and sometimes not. Also, last time I checked United does not serve peanuts. I had a very bad time with Continental. They will make no accomodation and I will never fly them again as long as my daughter is PA. Delta will give you a peanut free "zone", but they won`t tell you until you board the plane how big the zone is, it is up to the crew at the time. It may mean that only your row, the row in front, and the row behind are peanut free. Also, I am told early morning flights are less likely to serve peanuts, even if the airline usually does serve peanuts.

Lastly, I haven`t been abroad since my daughter has become PA. Labelling requirements in foreign countries are really different from here, and peanuts can show up in the least expected products (mole sauce in enchiladas, egg rolls), so please be careful. Some countries allow small amounts of peanuts in the product without listing it in the ingredient statement.

On Jan 2, 2002

Rue, welcome!

I must say that we have had some very heated discussions here re FAAN and FAAN has posted on the board in response to what some of us have said.

I really like the FAAN newsletters and the other educational material they have. I really like their BE A PAL Program. I use that each year with my son's school, to a degree. The newsletters I have also found great to help educate the school with.

However, as someone else noted above when saying why they didn't renew their membership, I am not pleased at all about their stance re "peanut free" schools.

I must say that as far as dealing with PA on a daily basis, this is THE place to come. I get my answers almost immediately and with great caring and concern.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

------------------

On Jan 2, 2002

I am a former member of FAAN. Although I acknowledge that they have done some good work, I chose not to renew my membership this year after listening to Anne Munoz-Furlong speak at the FDA hearing in DC on allergy labeling last August.

She passed herself off as representing FAAN members' views, yet most of her remarks seemed pro-industry and not at all sensitive to allergic consumers' needs (not surprising given FAAN's corporate sponsorship). I was especially upset with her stance on precautionary labeling. She poked fun at companies that voluntarily use "may contain" labels, saying that all they are doing is decreasing allergic consumers' food choices. For example, she poked fun at a label on a box of raisins that said "may contain peanuts." Well the reality is that those raisins were probably manufactured with trail mix, and may indeed contain peanut traces. And I for one would like to have that information, and do not want the president of FAAN to discourage companies from providing it.

In my opinion, FAAN's corporate sponsors greatly influence their advocacy efforts and I choose to no longer support them.

On Jan 2, 2002

Hey Rue, Where did you get this information about the salary? Got a link? Stay Safe, Rhonda

On Jan 3, 2002

Well, I think I'll quit subscribing to the FAAN newsletter. We struggle to pay the $30 per year and only make about 10% of what they are making. Sorry-I don't feel anyone needs a quarter of a million dollars per year to live on.

Gale

On Jan 3, 2002

Thanks for the welcome - I'm thrilled I found this site. It's nice I'm not alone out here! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Just a couple of points - first, the comment about the Sultan of Brunei. Remember, he made his fortune in business, just like Donald Trump or Bill Gates or anyone else. I don't begrudge anyone their success. If you work hard or invest well or anything else and get rich, more power to you! But I'm just a regular working person, not wealthy by anyone's definition. And when I write my little donation checks, I feel a bit of a pinch. I still do it, because it will go to a good end, but it means we do without something else down the line. And when nonprofits spend my money, I expect them to be accountable. So does the Federal government, which is why nonprofits' tax returns are public information. You can see the returns of any U.S. nonprofits at [url="http://www.guidestar.org."]www.guidestar.org.[/url] When you go to the main page, type 'food allergy' in the search box, and you'll see FAAN listed.

Some examples from their 2000 return (on Guidestar):

Page 4: Ann's salary is listed as $132,000 plus $9,241 in benefits and deferred compensation, Terry's is $105,000 plus $9,178 in benefits and deferred compensation (keep in mind this is for 2000, not 2001).

Page 2: $237,000 for compensation of officers, directors, etc. (Furlongs salaries listed above), $552,260 for other salaries and wages, $15,345 for pension plan contributions, $42,251 for other employee benefits, $53,878 in payroll taxes - for a total of $900,734 in SALARIES AND RELATED EXPENSES ALONE.

Also listed on page 2, total functional expenses for the year were $2,094,180. According to page 1, total contributions were $1,187,524. It just seems to me that these figures are a bit excessive, especially in comparison to the total amount donated.

I think FAAN has done some good work. I have nothing against them, but it does seem they could be a bit better with a dollar, particularly when the dollars they're spending are our hard-earned money.

In comparison, Food Allergy Initiative's expenses were nearly nothing - I k now where my next check is going. Some of that money will still go to FAAN, since Food Allergy Initiative funded some of their major projects (EMS training video, restuarant training video, etc.), but this way, the money will go directly to a worthwhile project.

One other note - FAAN did not invent the epipen trainer. The manufacturer did (the trainer is basically just an epipen without the needle or medication, with a reset mechanism so you can use it over and over.) FAAN sold them at one time, but now you have to get it from the manufacturer or the pharmacy.

On Jan 3, 2002

Dey and FAAN both contributed toward the development of the Epipen trainer. Dey just recently started including it in their Epipen 2-pack. Until recently it could only be gotten from FAAN.

On Jan 3, 2002

Carefulmom,

I am not sure what you mean by recent - but I got free Epipen trainers from Dey Labs almost three years ago. They also send lots of good info free - posters on how to use the EpiPen and info sheets on severe allergies. I gave the poster and a couple of the Epi trainers to the school nurse when my daughter was in kindergarten (she is now 2nd grade).

I also give most of my expired pens to the school nurse for training. During the training sessions she uses the Epi trainers and the real EpiPens on an orange so people can get the real feel of the pen.

Sue in sunny Arizona

On Jan 4, 2002

Wow, how time flies! I was referring to when my daughter was a year or two old and I used babysitters; she is now almost seven. FAAN providing a trainer was a life-saver for me. It enabled the babysitters to practice as much as they needed to so that they and I could feel comfortable.

On Jan 4, 2002

Rue,

Could you provide a link to the article you mentioned? I am interested in reading it. BTW, it may not be such an outrageous salary, given the area of the country, and all the other benefits that are included in that salary (ie health and life insurance, retirement benefits, etc), and the incredible amount of time that is required of a CEO of such a large non-profit organization.

Margaret

On Jan 4, 2002

While this certainly made me gasp when I first read it, it really isn't as outrageous as it sounds. This is a real problem with non-profits - the only way to attract quality people is to pay competitive salaries, unless the people involved happen to be fabulously, independently wealthy (or incredibly idealistic). And while $125,000 sounds like a lot, you'd be surprised how far it DOESN'T go in areas like DC, NYC or LA.

We too are average, middle class folk and the donation checks I write are not effortless. But as of now FAAN is the best source of info (all in one place) that can be used for schools, camps, etc. that we've got. I will continue to support them, as well as FAI. But for sure, everyone has to do what they are comfortable with.

Amy

On Jan 4, 2002

I agree that $125,000 sounds like a lot but you need to pay that to attract researchers that could get more elsewhere. I know that a salary like that doesn't buy you much in the Los Angeles area, just check out the real estate section of the LA Times. Quite shocking! -Cindia

On Jan 5, 2002

Quote:

Originally posted by Cindia: [b]I agree that $125,000 sounds like a lot but you need to pay that to attract researchers that could get more elsewhere. I know that a salary like that doesn't buy you much in the Los Angeles area, just check out the real estate section of the LA Times. Quite shocking! -Cindia [/b]

That $125,000 is paid as a salary to Anne Munoz Furlong. It isn't the salary of the researchers or anyone like that. I still hold on to my opinion-no couple needs a quarter of a million bucks to live on each year. I realize we live in an area with a lower cost of living, but we are having to get by on about 25,000 per year (with NO benefits-we pay our own health insurance and my husband gets no paid vacation) and we have 3 small kids.

Gale

[This message has been edited by gw_mom3 (edited January 05, 2002).]

On Jan 5, 2002

Carefulmom and Babyjakesmom - just wanted to let you know our experience with Southwest since it was brought up. Southwest will accomodate a PA person when making reservations (they require a letter from the allergist discussing the allergy). However, it is VERY IMPORTANT to mention it to the head flight attendant when boarding. When we boarded, I confirmed with the head attendant that no peanuts were being served and she didn't know anything about it. However, she did say that she would not serve the peanuts (after I showed her our letter from the allergist). Because she wasn't warned by the reservationist ahead of time, no snacks were served at all because they didn't have enough of any other snack to serve(which was a shame for everyone else - but good for us - and thankfully, no one complained about it). Also, the floor was COVERED with peanuts from previous flights. They apparently do not clean the planes between flights. I had to wipe down everything and pray that my son would not have a reaction to any peanut dust in the air (which he has in the past).

As for FAAN, I'm glad they are out there providing good information. Yet, I think it is totally unnecessary for someone working for a non-profit to be making that kind of money. A lot of that money could be going to research for a vaccine rather than their pocketbooks. I think it is such a shame!

On Jan 5, 2002

Thanks for the warning aabout Southwest. When we flew, they told me when I made my reservation to tell the agent on check in, so I did. That gave them ample time to find another snack to serve. However peanut crumbs on the floor is terrible. Maybe if you tell the gate agent as we did, maybe they make a point of cleaning the plane better? I told the gate agent about twenty minutes before boarding, so maybe that helped or maybe we just got lucky. We only flew them once. Just wondering if anyone else with a PA child has flown Southwest and what was your experience?

On Jan 5, 2002

$250,000 is pocket change compared to what most CEO'a make and that is what the Furlong's are. It takes great organizational and leadership skills to pull together something like they have done. I am sure if they wanted to leave FA and go to a Fortune 500 company they could make 10x what they make now. And if you think they make a large salary taken from donations, check the salaries of United Way and Red Cross bigwigs.

On Jan 5, 2002

Carefulmom - I failed to mention that we did remind the gate agent upon check-in that we had requested a peanut-free flight. We checked in about 1 1/2 hours before the flight per their request (thus, they had ample time to get another snack on board, but didn't). I'm glad your flight went smoothly, though.

On Jan 6, 2002

Well, that certainly is disheartening. When I get around to it, I think I`ll start a thread on airlines (if there isn`t one already) and see what other people`s experiences have been.

On Jan 6, 2002

About the salary: You really need to get all the facts before you insinuate that someone is doing something unethical. To have a fair debate you would have to know the going rate for CEOs in non-profits in that area of the country. I mean, believe me, I *wish* I made that kind of money. I wish daycare providers were paid the same as surgeons, & that teachers were paid as much lawyers, but that is not reality.

The reality is that CEOs generally make good money & have *tons* of responsibility to go with it. And, managing people is NOT a fun job. I really do not know if this is a fair salary, but let's be fair to these people, & get the facts before we just start slamming them.

I don't mean to sound too harsh but I think we have a responsibility to be fair to people we are commenting on.

Amy

On Jan 6, 2002

I have to agree...I've been thinking about this one for several days and I think their salaries are probably right in there for what they do.

My boss is a corporate VP of communications for a Fortune 100 company and she makes about $125K plus perks. That's just for managing a department of 25 and a budget of $2M...she didn't have to start it all up!

Personally, I'm happy to send in my $30 a year. Based on some of the other NFPs I've seen, it could be run a whole lot worse!

On Jan 6, 2002

Their salary may be in line with other charities, but I don't think that makes it right. The same could be said for the multimillion dollar salaries of sports figures. Personally, I couldn't sleep at night knowing that I was making that kind of money when my organization is supposed to be helping people who sometimes don't even have a home (not talking about faan here, but other ones like united way and red cross-which I won't donate to either one, btw). Anyway, I'm sure the red cross and the united way help even the people who don't send in $30 per year.

Gale

On Jan 7, 2002

According to a popular online salary calculator ([url]http://www.homefair.com/homefair/calc/salcalc.html[/url]) which calculates how much you would need to make in one city to maintain a certain lifestyle you had or have in another city, $125,000 is about equal to $81,000 in Cincinnati (where I work). To me, that seems pretty reasonable compensation for running a national organization, whether you agree with its positions or not.

On Jan 7, 2002

There are other threads in this Main Discussion Forum which also deal with how FAAN distributes its donations and corporate funding. For example, the Peanut Council gave Anne Furlong tens of thousands of dollars to prove that peanut bans in schools don't work. (!!!) Just type Anne's name into PA.Com's search engine - or type FAAN in - one way or another, you'll get lots of info.

Actually, if we keep discussing this heatedly enough, FAAN itself might even pop in to post a rebuttal. FAAN wagged its finger at PA.Com members last spring for daring to discuss distribution of funding, so perhaps they'll provide another chastisment in the near future.

Having said that, charitable donations going to a non-profit organization still MUST cover administrative expenses and pay cheques, or people won't staff it. A lot of people (not referring to anyone in this thread in particular!) think that a charity is staffed by volunteers and is supplied with donated office needs, etc. Charities and other non-profit orgs. have closed down, or been threatened with closure, due to lack of donations.

One such groups threatened is one I belong to - ADDO (Attention Deficit Disorder Organization) - to help me deal with my eldest child's ADD. This absolutely fantastic group has literally no funding, so it may fall apart. What an absolute tragedy and loss that would be to the Ontario ADD/ADHD community! We need as much support for brain disorders as we do for body disorders. I would hate to see such a thing happen to FAAN - although I disagree in principle with many of their policies, I can't discount the awareness they have raised on our behalf.

Carolyn

On Jan 7, 2002

I don't feel that the compensation for the FAAN executives is out of line. NFP need to attract quality personnel just as much as industry does. I think that FAAN is a wonderful, quality organization and I am very thankful for their work and the products that they provide. I am a member and send an addtional annual donations when I can manage it.

Also in response to another comment in this thread, I agree with their position on "may contains" as potentially being a cop out that the manufactors can use to protect themselves instead of using thier brains to solve the problems of properly cleaning, testing or altering their plants to strive to make the products safe for allergy sufferers. While no one wants unsafe products represented as being safe, better labeling and safe manufactoring practices are linked but not exactly the same thing.

On Jan 7, 2002

Speaking of donations to FAAN - I wonder how many of us really know that Chris of peanutallergy.com has done as much or more for all of us as FAAN?

Where is FAAN's bulletin board? How do they allow us as a group to interact with them? FAAN frequently indicates publicly that they represent the peanut allergy community.

They have some good information - but most of it is available on other sites or searches.

Chris is the one that has either refinanced or sold his HOME to provide us with this board to help us keep informed and to get to gether as a group to contact people and companies about the needs of our children.

So isn't it about time we all send in our donations to Chris? This board is NOT maintained free - it costs him lots of money and TIME. He doesn't set a fee that we must pay to use it. He has lots of links on this board that answer most of our questions and provides us with updated info.

Anyone notice that FAAN does not provide a link to peanutallergy.com - why? Could it be because he doesn't charge for his information? I used to be a member of FAAN.

Everyone that uses this board and that can afford it should send Chris some money today (yes, even if it is only five dollars). I know that this board has saved me money and time on Dr. visits and fighting schools. We all share such wonderful information and support because of Chris. He brings us together - FAAN gives us information for a fee. So if we want this board to keep running lets donate to the peanutallergy.com fund today.

Sue in Sunny Arizona

On Jan 7, 2002

Chris, if you're out there, please let us know if you have not-for-profit status.

I have no problem sending a donation, but I'd like to be able to deduct it on my taxes!

Also, since you seem to be an internet wizard, how about setting up a "quick donation via Paypal" link?

On Jan 7, 2002

I don`t agree that we need as much for support for something like ADD which is not life threatening as we do for PA which is life threatening. It`s great if one has lots of money to contribute to many different charities. However, my resources are limited and I prefer to spend them on support for illnesses which are life threatening. FAAN and PA.com both have many accomplishments to their credit, although both have helped us in different ways.

On Jan 7, 2002

carefulmom - obviously ADD does not affect your life or you would not make such a callous statement about it. I would prefer not to go into an essay length rebuttal (although I could quite easily), but I will say this.

An EpiPen "literally" saves the life of my PA daughter. Ritalin "figuratively" saves the life of my ADD son, by helping him control his impulsive behaviour (looking both ways before he crosses the street). Studies show 1/4 of jail inmates have previously undiagnosed ADD - impulsivity is their downfall - and this same disorder leads to teenage drug use (self-medicating) and suicide attempts.

I consider my son's ADD equally as life-threatening as my daughter's PA, and it is obvious that organizations like the ADDO must survive in order to educate people like you.

Carolyn

On Jan 7, 2002

Whether or not salaries of $125,000 each for Anne Furlong and her husband are reasonable is open to much debate. What struck me about the figures quoted here was that expenses are almost double the amount of donations, and salaries and "related expenses" are almost half of the expenses. I admit I am speaking without further research, but that doesn't sound like optimal use of donation money. There are charities that strive to use 20% or less of donations on expenses. It sounds like FAAN is falling far from that mark. And optimal use of donations is certainly an important consideration for me in deciding where my charitable dollars go.

On Jan 7, 2002

Salaries are a big budget item in most organizations. "Staff salaries" can easily munch up half a budget. People cost money. I worked for a non-for-profit who researched this somewhat to make sure we were in line with budget items.

I am not for or against FAAN. I haven't researched the organization enough to know whether they are doing anything wrong or not.

I am against people hurling unresearched accusations at people out of emotion. I mean, why would you say they do not show PA.com as a link because it offers free information? What do you base that on?

I am all for accountability & debate on oragnizations. But, you really need to have facts & understand the facts before you make accusations. If you disagree with some positions FAAN takes on PA, that doesn't mean you have to dis the whole organization out of anger. Or drag people's name through the mud without researching your points.

On Jan 7, 2002

I have to pipe up on the brain/body disorder thing. I have a dear friend of over 30 years who right now is in a serious, serious depression. This IS life threatening. We know enough now to know that brain disorders ARE physically based. If you don't think brain disorders can be life threatening, think of the Andrea Yates trial which is currently front and center in the national news.

I know this was a digression from the original thread, but just had to add my $.02.

Amy

On Jan 7, 2002

Yes, ADD does affect my life or I would not be in a position to compare it to PA. I would rather have ten children with ADD than one with PA. For me nothing compares to having to worry daily about someone eating peanut butter and touching my daughter without washing their hands which for her could be fatal. I don`t live with that daily fear with ADD.

As far as depression, I didn`t comment on it. What I said was I would rather spend my limited resources on illnesses which are life-threatening than those which are not. Going Nuts, I never made a generalization about all brain disorders. What I said was specifically about ADD. Aside from Andrea Yates, all one has to do is look at suicide statistics to see that depression can be fatal, and in fact I have contributed to that cause both financially and by volunteering my time.

[This message has been edited by Carefulmom (edited January 07, 2002).]

On Jan 7, 2002

carefulmom - you are certainly entitled to your opinion that your child's PA is more serious an issue than my son's ADD. I believe if I post another rebuttal it will turn into an unfortunate contest over who has the biggest burden to bear, so I won't. You can certainly hold the opinion we can pull the plug on "my" groups, like ADD, because they aren't as important as "your" groups, like FAAN. Your money is your money - give it to whomever you like. Whatever.

But have you considered the irony of your post? The one where you discount "my" problem, while knowing nothing about what I deal with? Your ADD situation is not my ADD situation - my PA is not your PA, understand? Other people underestimate the seriousness of PA every day, and our collective wish is that if only people could walk in our shoes for a day, they would "get it". How can we expect compassion, or at least understanding, if we won't give it? Don't negate my experiences.

Carolyn

[This message has been edited by Cayley's Mom (edited January 07, 2002).]

On Jan 7, 2002

Glad to hear so many different points of view. Whether or not we agree, discussion is good and productive nonetheless.

Kim hit the nail on the head as far as what my original point was in beginning this topic - I'm not against FAAN at all. As I mentioned several times, I think they do good work. My one and only point is that it seems they use up an inordinate amount of their budget (i.e., donations) with salaries and other perks. I willingly and gratefully make donations to charities and appreciate what they do on behalf of the public, but I would no more hand my money over to someone I think is wasting it than I'd walk into McDonald's and pay $50 for a cheeseburger - it's just a waste of money, that's all. I'm a member or donor to numerous other nonprofits, and I can assure you that not all use that percentage of their operating budget on paychecks.

As for the cost of living in the D.C. area, I know that firsthand - I'm a native of the area, and live in the same zipcode as FAAN's office. I am not slamming anyone, I just thought this was a forum for open discussion. Whether you agree with me or not, I've appreciated the opportunity to voice my views. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

On Jan 7, 2002

Cayley`s mom: Well, you certainly read a lot into my post that wasn`t there! What I said was I don`t agree that we need AS MUCH support for something like ADD which is not life threatening as we do for PA which is. I certainly didn`t mention anything about "pulling the plug" on ADD groups nor did I negate your experiences; in fact, I didn`t even comment on them! I simply said that with my extremely limited resources I prefer to donate for causes which are life threatening than those which aren`t. If I had more money, it would be a different story.

On Jan 7, 2002

Rue- Perhaps you could write or email FAAN & ask them to explain their budget centers & ask them to address the questions you have. Who knows the CEOs in question just might answer you. Good luck [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

On Jan 7, 2002

Careful Mom,

I would love to respond via email rather than clog up this thread, but your email isn't listed, so please forgive me everyone.

Sorry if I generalized to all brain disorders if that was not your meaning. This is a sensitive spot right now - watching my friend deteriorate has been very painful, and I have felt utterly helpless.

That being said, through our local Special Ed PTA I have met many parents whose children have such awful, awful problems associated with ADD and other LDs that they think PA is a walk in the park. One of my friend's son has ADD/ODD and Tourettes and was just kicked out of an alternative high school. He is in constant trouble, despite his hight IQ and basically very sweet nature. Her panic over her son's future is no less real, and no less justified than our panic over our children's PA. Personally, I wish there was enough $ to go around to fund all worthwhile causes, but of course there isn't. As personal as PA is to me, I could never say PA is more worthy than the organizations she relies on. The consequences of her son's problems are not only devastating to him, but to everyone who deals with him on a close, personal basis.

Again, my apologies to all for clogging this thread! [img]http://uumor.pair.com/nutalle2/peanutallergy/redface.gif[/img]

Amy

On Jan 7, 2002

I have to agree with Sue in Sunny Arizona, I mailed $40 Canadian a couple of weeks ago to support peanutallergy.com. Of course the $25 American is $40 Canadian so to me a stay at home mom that isn't pocket change. I really love this web-site and believe in supporting it because it has helped me a lot. I can go on and on why I like this site but I think everyone probably loves it for all the same reasons as I do. I also want to add, sometimes what we may type to say comes out differently than what we mean. Maybe, if before we take it the wrong way we write to ask the sender of the post for clarification. God, I know debate is good, but sometimes it really pisses me off when we beat each other up over stupid, misconstrued words.

On Jan 9, 2002

I work for a non-profit (as a fundraiser) in this same area of the country, and neither their salaries nor the portion of the budget represented by salaries struck me as at all odd. They are both completely in line with what I'm used to seeing. Salaries are almost always the largest portion of any budget. Also, contributed income generally accounts for about half of an organization's budget. The rest comes from earned income and investment income for the most part (although that varies from organization to organization, and I don't know if FAAN has an endowment to supply investment income).

As for the feeling that it's weird that our $30 donations help pay those salaries--well, where else do you expect the salaries to be paid from? I'm glad that my salary is paid by the donors who give $5 and the government grants that give us hundreds of thousands annually--and I'm glad that my work helps pay for my colleagues' salaries with the $3 million I raise annually from foundations and governments. If an organization does good work, pays reasonable salaries, and doesn't run an annual operating deficit, I'm happy to contribute.

Sarah

On Jan 9, 2002

I've been thinking about this issue for several days now. At first, I was startled to think that my donations to FAAN are going straight into Ann's salary. But, the more I think about it (and certainly from reading the post just above mine) I don't have a problem with it AT ALL. I have gotten so many incredible resources from FAAN. Way before there was a PA.COM, I was relying on FAAN as my only source of information for how to deal with such serious food allergies. Even now, I devour my FAAN newsletter, always looking for some new information. I believe that FAAN has tremendous credibility with the media, schools, and just about anywhere else where I would want to see correct information getting out. I have been a member of FAAN for six years, and I try to send an extra donation every year, too. These boards serve a wonderful purpose, too. And yes, there are things that I wish FAAN would do a better job with. One of those things is that I wish they would take a stand for a peanut ban in schools. Even so, I feel that they are a first class organization doing an incredible job. I am glad that Ann earns a good salary. I don't feel that she should have to scrimp and save to get by just because she has decided to devote her wonderful talents and energies towards helping our kids! I'm sorry if I sound a little too passionate about this, it's just that after taking the time to think about it I realize I do want to share my feelings on the subject. Also, I agree with FAAN's stance on labeling. I don't like to see things labeled "may contain peanuts" just because a peanut may have entered the building, for example. I want to see companies make a real effort to produce safe products, and to be held accountable for doing so. I want products labeled as a risk if there really is a risk. I find it very upsetting that so many products are off limits to my daughter because of the "may contain" situation. In fact, this is easily one of my biggest frustrations with her allergies.

Also, I'd like to lend my support to Cayley's mom and anyone else dealing with ADD or ADHD, as well as any other problem. It's easy for us to feel like PA is the end of the world, but there are many other problems out there which are just as difficult (and many which are surely more difficult) than PA. I've had concerns about my own (PA) daughter's social adjustment and school behavior. I truly think that if I could choose between a socially and acedemically successful pa child and a non pa child who has lots of problems caused by ADD, I think I would choose the first. Of course, I know this is not a fair choice, and these things are not either/or. I'm just using it as an example. PA is very stressful, but things could be MUCH worse.

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