non-profit status

Posted on: Thu, 06/14/2001 - 1:45am
CVB in CA's picture
Joined: 10/15/1999 - 09:00

Chris- I am glad to see you have addressed non-profit status in your last post on Nathan. I have always been concerned about this and wish you would post something about this in your home page.

A mission statement that it is the ultimate goal of to go non-profit as both an educational AND advocacy group in addition to being a big discussion board might remove questions in people's minds. If you think this might jeapordize or weaken your position in "letting the cat out of the bag" I think you might be wrong.

I think non-profit status is absolutely key in how an organtization is perceived by the public and by contributors. Everyone is so used to being solicited for money on the web and everywhere else that they are suspicious of for profit .com names. As you pointed out, non-profits are not automatically well run and often have inflated costs. Unfortunately, non profits are automatically seen as more credible. Its not what you are, it's how it looks.

I think you should seriously consider the dual route and establish a twinned organization- one non-profit for education and one non-profit for action. The only organizations that comes to mind that have done this are planned parenthood and league of women voters, but they also did it to preserve independence. They do have much deeper pockets and can probably get legal help to establish it more easily.

Also, establishing a seperate non-profit education group sooner would not prevent the formation later of a non-profit that could perform both functions and reabsorb the education non-profit. It might even be able to finace the merger.

The education non profit should fund the discussion boards and the informational alerts, etc., and your educational work with the media. The advocacy group for lobbying efforts might have to be established as a seperate linked discussion board (ouch!).

I don't suppose any PA parents or indivduals are attorney's who could do pro bono work and reduce that 10 to 25K estimated cost to begin work on a good non-profit charter for Anybody out there?

Posted on: Thu, 06/14/2001 - 2:49am
Chris PeanutAllergy Com's picture
Joined: 04/25/2001 - 09:00

There are many members who are lawyers etc. and donate their skills willingly to help us, the problem is that we have not found any yet that are experts at non-profits. We are still looking, and have many of them asking their colleagues for help, referrals etc.
This week we have been putting together information for a brochure and more information on what we are and are working towards so we will add to the site soon about this.
We are currently working on a membership drive so if anyone has any ideas or can volunteer any time or services let me know.
We will be taking up some of our members offers to do the printing of the brochures etc.
We have always planned to go with non-profit status and we are working towards that goal.
Thanks for posting about this and spread the word around that we need help and for all of us to become paying members so we can continue to fund this effort.
Talk to you soon. Could someone copy and paste what I posted on Nathan's thread to this thread also? Very busy here and your help is appreciated.
Thanks in advance
Stay Safe,

Posted on: Thu, 06/14/2001 - 4:17am
BENSMOM's picture
Joined: 05/20/2000 - 09:00

Here's Chris' post from the other thread:
I want to thank Nathan's family for originally considering PeanutAllergy.Com. We were contacted by their attorneys and told that the family wanted to set up a fund for Nathan and have donations made to PeanutAllergy.Com. We did, at the attorney's request, set up the bank we use to accept and track any donations, cards, letters etc. and then we waited to hear back from the attorney. We waited a day and then contacted the attorney to find out if they were ready for us to put up the donation information on the site and to find out if he had a chance to find out from the family what they would like to have written on the site. We also wanted to find out as per our phone conversations with the attorney if the family decided if they liked the way the account was set up or if they would like to change anything such as adding Nathan's name. It was then that we found out the family, after having more time to consider their options, elected to go with a non-profit and a fund set up with Nathan's name.
As many of you already know we have been working towards creating a well funded non-profit "action" organization (funded by our members, to avoid any conflicts of interest with any manufacturers, or other groups which we may have to go up against to create a safer world for those with peanut allergy).
We have resisted the great pressures to just go out and become a non-profit as many other groups have done. Acquiring non-profit status is not difficult, it takes only a few months and about $500 dollars. However to do it so we will be set up to work on the issues which we already are aware of and those issues which have not been realized yet, such as when a parent calls with a new or unique problem, does take some work. We have met with lawyers and other professionals over the past few years to find out and plan what it will take to set up our charter so we can work on all the issues (and be able to help with any new ones that come up) and we have been given estimate from between $10,000 to $25,000 to have the lawyers write the charter so we can do what needs to be done. We don't want to have an issue come up which we cannot work on, nor do we want to have to fear losing non-profit status.
Without mentioning the name of the educational non-profit that was not able to help work on an important issue recently, I will say that we don't want to be in that position. I listened to their fear of losing their non-profit status if they worked on that issue. We have learned from years of experience that we need to be a large, well funded "action" non-profit. What this means to us is that the "action" non-profit would not pay taxes on what it brings in, but it would not be deductible for the donors. Unlike an "educational" non-profit which by law cannot lobby as much as an "action" not profit, but with an "educational non profit status" the donors can deduct their donations from their taxes.
There is a lot to what we are working towards.
When something like this comes up where a family would like to help PeanutAllergy.Com financially by having donations made to us, it puts a lot of pressure on us to rush to non-profit status. We have resisted this pressure in the past, and I can tell you it is very hard to do as we are in desperate need of financial support to help sustain this resource and our tremendous growth.
What I have learned from the many years of working on our non-profit plan is that the only real difference between a non-profit corporation and a "for profit" is how the public sees it. We are often asked what we are. Are we an organization, a company or what?
This is difficult to answer as it is probably a company at this stage, but this whole effort is being done to create a powerful, well funded "action" based non-profit. We may also set up an "education" based non-profit and we will write more on this soon as to the reasons we may need to set up both.
As you probably know already, many non-profits pay their top people very, very well. Non-profit status does not mean they are set up well or are doing a good job.
As many of us know PeanutAllergy.Com is well respected and recognized.
We hear from other organizations all the time and they tell us what a great job we are doing and they often contact us for help.
We plan to go with non-profit status and it is one of our goals. We feel we must set up this way (as a non-profit) if we are to reach our full potential.
We are saddened that we were not able to help Nathan's family at this time by setting up to receive donations in his name. We felt we would have been able to do so much with the funds.
We are working towards having national minimum standards in place by law for those students with peanut allergy. We don't want the parents to have to be the ones to educate or fight with the school. We want there to be protocol for peanut allergy so the schools will know what is required of them, and the parent will know what to expect from their child's school.
I will end here as it is very late and there is still much to do.
We won't let what happened to Nathan be forgotten. It could have been any one of our children that this happened to. It is our worst fear. Many of us are holding our children tighter than usual now and thinking of a boy that we never actually met, but that we miss terribly. We feel connected to him and his family in a way that only we truly understand.
Chris Papkee

Posted on: Thu, 06/14/2001 - 10:34am
EILEEN's picture
Joined: 04/06/1999 - 09:00

CVB in CA,
I had never realised the complexity behind establishing non profit status but what you have written made a lot of sense. Given that "perception is reality", I think a mission statement would go a long way towards establishing the credibility of PeanutAllergy.Com with a wider audience (I know many families who chose not to get involved with a .com because of the perception issue). I liked everything you said but have no idea about any of the legal requirements or consequences. In the long run I think it would bring in more $.
BUT as a donor, it would be great to read the "MasterPlan" and how it is progressing when I log on.
I believe that one additional reason for the preference of many people for non-profits (despite the limitations mentioned) is that the financial statements including tax forms are readily accessible to the general public. Donors can make a more informed decision about where to put their money. The financial statements of privately owned companies are difficult and expensive to obtain.
The following link
takes you to a site where you can freely access statements of non-profits AND see their tax statements including salaries!
Click "More Financial Information"
"View IRS Form 990"
I have done this both for FAAN and FAI
FAAN is at
[url=""][/url] Report
There is also a list of FAAN's Officers, Directors, and Trustees.
The link for the Food Allergy Initiative is
[url=""][/url] Report
It is good way to check up on how your money is spent by non-profits.
I encourage you look this information up for FAAN as well as FAI (I'm not sure whether it's OK to post people's salaries here) BUT it has given me some food for thought (no pun intended).
[This message has been edited by EILEEN (edited June 14, 2001).]

Posted on: Thu, 06/14/2001 - 11:39am
PattyR's picture
Joined: 04/12/2002 - 09:00

I am glad to hear that the ultimate goal is for a nonprofit organization. Many companies, including my husband's, will match donations that are made to nonprofits. I look forward to a time that when we make a donation it can be matched by his company. Many of your companies may also do the same so I hope you will keep this in mind for when the time comes.

Peanut Free and Nut Free Community

Click on one of the categories below to see all topics and discussions.

Latest Discussions

Latest Post by Italia38 Wed, 01/15/2020 - 11:03am
Comments: 10
Latest Post by Italia38 Wed, 01/15/2020 - 10:52am
Comments: 2
Latest Post by penelope Tue, 01/14/2020 - 1:03pm
Comments: 1
Latest Post by penelope Sun, 12/29/2019 - 6:21pm
Comments: 2
Latest Post by sunshinestate Sun, 12/29/2019 - 6:00pm
Comments: 3
Latest Post by Italia38 Sun, 12/29/2019 - 5:44pm
Comments: 5
Latest Post by justme Tue, 12/17/2019 - 3:41pm
Comments: 4
Latest Post by justme Tue, 12/17/2019 - 2:39pm
Comments: 45

Peanut Free Store

More Articles

If you have a food allergy, you will probably need to make some changes to your diet...

When love is in the air we can get caught up in the moment and throw caution to the wind. However, if you have a...

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

Many doctors treat allergies, including pediatricians and general practice doctors. When allergies are severe, primary care physicians often refer...

If you are looking for a way to support food allergy education and awareness, you may be interested in a documentary created by a young filmmaker...

The most frightening thing about a severe allergic reaction to a new food is that it can happen so fast. If parents are not looking for allergic...

Skin rashes and itching are common allergic reactions to peanut butter. According to the Mayo Clinic, reactions to peanut butter can happen within...

A low oxalate diet may be recommended to prevent kidney stones from forming. Oxalates are chemicals found in plant-based foods. These may collect...

So many wonderful recipes call for peanut butter. These recipes can still be enjoyed by experimenting with peanut butter replacements.


According to the Asthma and Allergy Foundation of America, one out of five people in the U.S. has an allergy. Because there is a...

Hydrogenated vegetable oil sounds healthy because of the word "vegetable" in it. The truth is that it is not very healthy at all because it...

Foods with soy lecithin may need to be avoided if you have a soy allergy. Soy lecithin is present in many different foods. Since it is derived...

At some point in time, most people will suffer from food intolerance or a food allergy. Having an unpleasant reaction to something you have eaten...

The Jaffe Allergy Technique or Jaffe Mellor Technique (JMT) is an alternative approach to addressing symptoms of a variety of health issues, both...

Phenols found in healthy fruits, vegetables and grains could point to food allergies...

Allergies and anxiety are often experienced together, yet there is no scientific evidence that either condition causes the other. The enduring tie...

Tree nuts and peanuts are distinctly different. An allergy to one does not guarantee an allergy to the other. Peanuts are considered legumes and...

What can you eat if you can't eat peanut butter? Fortunately for people with a peanut allergy, there...

A few years ago, a 47-year-old Toronto woman received a lifesaving double-lung transplant. After the transplant, she suffered four anaphylactic...

Whether it's the holiday season, birthdays, or a dinner party, there's always a need for good gift ideas but it gets a bit more challenging when...