[truckergordon]

In the US we have seen many examples of the unethical practices of businesses, the corruption of leaders in reputable nonprofits, and the spiraling of our economy. We seem to be a society of self-righteous, greedy people who are “in it for me” rather than the good of the whole.

Understanding the business decisions of nonprofits is important to my decision of who I support.

I am new to the celiac community, but not new to nonprofits. I have spent time reading, watching, and asking questions. I can’t help but wonder if national celiac groups in the US are ruining their own credibility and on a course of self-destruction? Is there something that we consumers need to do to help these organizations be credible?

For example the Principles for Good Governance and Ethical Practice, which all nonprofits are, encouraged to follow to comply with transparency requirements by the IRS, states that Board members should not benefit from their role on the charity’s Board, except as a member of the organization. So I found it disturbing that CSA has as their President-elect a person whose business could potentially see a gain of over $2.4 million in book sales if CSA successfully meets their goals in their Physician Education Program. When asked about this, CSA Director said that their Board had done due diligence in reviewing the situation and had set agreements in place to keep the President-elect from having a “direct role” in the program. She goes on to further state “No substitute reference book was available.”

Boards are required to be aware of conflicts of interest of their board members, and to control the influence of those with a conflict of interest in decisions from which they would benefit. While CSA states that they have done this, I believe it is naive to believe that the President-elect will not be able to influence Board members, even though he does not have a ‘direct role’ in the program.

I asked what other reference books were presented for review and inclusion in their program. Was Dr. Peter Green’s book presented or the DVD’s by Dr. Pietzak? I am waiting for an answer.

The partnership between CSA and the President-elect at the very least sets a bad image and perception to those served by the organization.

Another example of a celiac organization making decisions that may not be in the best interest of their organization or those they support is NFCA. The IRS says that Director’s compensation should be “reasonable.” Nonprofits must now document how they arrive at the salary paid to their top executive. I was curious how the groups compared, so I did the math. Using a salary calculator I compared the salaries of the celiac organization directors with similar size nonprofits in their cities. I used the size and income information provided by the celiac organization’s IRS 990 report as a means of comparison for consistency. The results were surprising. It seems most celiac organization directors are paid either at or under the average salary as other similar size organizations, with the exception of NFCA. In 2006, their director was paid 180% of the average salary of similar size nonprofits in their area. This was an increase in salary from the previous year.

When I asked about this the NFCA representative basically said that the governing bodies of NFCA were satisfied with the operations of NFCA. The Board is responsible for setting and approves the director’s salary. The NFCA statement implies they did just that. Is this responsible spending of their donor’s contributions? A recent letter from their director is asking my help (and yours) to raise $100,000 in one month to “stay on track with our goals.” Now it sounds like NFCA is asking us to bail them out.

It would seem that even our trusted celiac organizations are vulnerable to bad judgment when making business decisions. The Principles for Good Governance and Ethical Practice set out “must do’s and don’ts” and “suggested do’s and don’ts” for nonprofits. The 990 IRS report for nonprofits, as of 2008, requires much more documentation on salary and programs.

I have been trying to figure out who to support with my donation. Supporting celiac organizations is near and dear to my heart. These organizations are responsible for making a big difference in the lives of all of us, but I can’t help wondering if they are smart businesses and deserving of my support.

I encourage all of you to take a close look at the celiac organizations. Review their 990 reports. Know how they spend their money. Are they following the guidelines for transparency and the Principles for Good Governance and Ethical Practice? Are they working in directions that support their mission and goals? Do you know what their mission and goals are? Are they doing program evaluations and do they make those available to you? I would like to know the answers to these questions as well. What about you?

I encourage you to be a smart donor. My giving decision will be based on more than the financial decisions of the groups. It is an important factor but not the only one.

I would like to hear your thoughts on how the groups compare and how you make decisions on who to support.

[captaincrab55]

truckergordon, That was some "First Post".... The first site I visited (after finding out I had Celiac Disease)wanted a registration fee and monthly to yearly fees for what one can find here for free.. I for one will support this site.

BTW, Tell us something about your connection to Celiac Disease

[Tim-n-VA]

I don't really care. 180% of average salary is almost a worthless statistic. There are so many factors that could justify salary variation it is impossible to evaluate. Tell me the ratio of admin and fundraising costs to "direct benefit" costs and you might have something meaningful.

[ravenwoodglass]

If you want to be generous and donate in a way that will for sure help those in the celiac community how about instead of spending your time researching and looking for 'problems' in the organizations you instead take that cash, go to the store, pick up gluten free items and deliver them to your local food bank. You won't be stressing yourself out and mud slinging and you would be helping folks who may desperately need it.

[Jestgar]

not-for-profit is not volunteer.

You made a lot of statements and yet offered references for none of them. If you want people to really take you seriously you'll need to give us links to where you got your information.

[jststric]

are you being a part of any kind of solution or are you simply stirring the pot? At least offer up some very real solutions that everyday people can do. This world is way too politcal now. We don't need more.

[lovegrov]

If you want to be taken seriously you need to provide more information. For instance, what the heck are you talking about with CSA? I'm not a CSA fan but it's impossible to come to any conclusions from what you posted.

New to the celiac community? What does that mean? Do you have celiac?

richard

[RideAllWays]

Did you just throw this together out of your own opinions and thoughts? I would like to see references and quotes before I can take this seriously. It seems like you may have posted this on more than one celiac board, and yet I'm not totally sure what your point is. Donating to celiac research organizations isn't much different than donating to diabetes, cancer research...there are always going to be scams. Without concrete facts or any comparisons nobody can really know what you are hoping to get out of this.

And your connection to celiac is?

[JNBunnie1]

captaincrab55, on Aug 13 2009, 05:48 AM, said:

BTW, Tell us something about your connection to Celiac Disease

One.

ravenwoodglass, on Aug 13 2009, 08:27 AM, said:

If you want to be generous and donate in a way that will for sure help those in the celiac community how about instead of spending your time researching and looking for 'problems' in the organizations you instead take that cash, go to the store, pick up gluten free items and deliver them to your local food bank. You won't be stressing yourself out and mud slinging and you would be helping folks who may desperately need it.

Do you know of any food banks which are willing to save gluten free food for those that need it? Last I checked, most simply have a first come first served policy. It'd be great if there were any that did. Might be easier to find those in need here.

lovegrov, on Aug 13 2009, 11:47 AM, said:

New to the celiac community? What does that mean? Do you have celiac?

richard

Two.

RideAllWays, on Aug 13 2009, 11:50 AM, said:

And your connection to celiac is?

Three.


Are we now requiring membership cards? Does someone need a Celiac handstamp to share perfectly valid concerns about how organizations that are supposed to represent OUR interests are run? I don't have cancer, but I can tell you I have grave concerns over how the American Cancer Society is run. I'm not going to keep my mouth shut just because I'm not part of the club. Last I checked, these organizations are willing to take donations from anyone, which means they should be willing to take questions from anyone, and so should we.

[Lisa]

Unless the original poster is a "troll", Board Rule #5 suggests that a post should be supported by documentation or clarified as personal opinion. "a troll is often someone who comes into an established community such as an online discussion forum, and posts inflammatory, rude, repetitive or offensive messages designed intentionally to annoy or antagonize the existing members or disrupt the flow of discussion"

Opinions are welcome. Unsupported claims about the inept abilities of specific organizations are discouraged, according to Board Rules.

http://www.celiac.co...?act=boardrules

Any claims you make here should be based on legitimate sources, or be expressed as opinion, experience, or inquiry. You should remain on topic and be consistent with the theme of the forum as a whole.

[ravenwoodglass]

JNBunnie1, on Aug 13 2009, 02:29 PM, said:

Do you know of any food banks which are willing to save gluten free food for those that need it? Last I checked, most simply have a first come first served policy. It'd be great if there were any that did. Might be easier to find those in need here.

I certainly don't object if they give the items that are specifically labeled gluten free to other folks that are hungry. If they run out of regular pasta then giving the gluten free items I donate to those that want them is fine with me. What I donate the most when I can is pet food and I don't donate anything I cannot eat with the exception of items that were purchased and I then found out were not safe.
If the original poster wants to post the type of stuff they posted they should have backed up what they said with links to the information. To try and cut apart an organization without providing links seems very much like someone with a attitude rather than someone who is genuinely concerned to me. Perhaps I would feel differently if this wasn't the first and only post from this 'source'.

[ravenwoodglass]

Momma Goose, on Aug 13 2009, 02:46 PM, said:

Unless the original poster is a "troll", Board Rule #5 suggest that post should be supported by documentation or clarified as personal opinion.

Opinions are welcome. Unsupported claims about the inept abilities of specific organizations are discouraged, according to Board Rules.

http://www.celiac.co...?act=boardrules

Any claims you make here should be based on legitimate sources, or be expressed as opinion, experience, or inquiry. You should remain on topic and be consistent with the theme of the forum as a whole.

We were both posting at the same time. I must say you worded your response much better than I.

[truckergordon]

1. 990 reports of all nonprofits are posted on www.Guidestar.org. Anyone can see them and see how they report their money.
2. Based on figures found on each organization’s 990 (complied 6 months ago) and using standard calculations used by the Combined Federal Campaign for each dollar raise the groups spent the following percentages on direct public support:
CSA – 98.86% (99 cents/$1)
CDF – 94.81% (95 cents/$1)
GIG – 98.45% (98 cents/$1)
NFCA – 64.58% (65 cents/$1)
ACDA – no reports at this time
3. CSA's our press release + figuring the retail cost of sending a packet to the doctors (which they ask you to pay so they can do it) and the retail cost of the books sold to CSA. Yes, I did ask CSA about the books they are buying and they did not deny it.

As for my association to celiac disease – I have celiac disease and so do other family members. But as someone else put it – Is that a requirement for being part of the celiac community? I belong to the diabetes and cancer communities too but I don’t have either. I have money to give to charity.

I understand one of the reasons it is so hard to figure out the actual number of diagnosed celiacs is because they don’t have a good means to do that except to look at membership numbers in various celiac groups. Surely you know that if I am out there on a number of forums and groups, then you are too. This is why they don’t have an accurate number – we belong to many groups. Is that a crime?

I wish giving gluten-free food to a food bank were the answer, but it is not. History showed that to be a failure in a couple large disasters. I have heard that some support groups have food they give to those in times of need. They or this forum do seem to be a reasonable place to look first, but that means it is public and that is not easy to share, even in times such as we are in now.

So let’s start over.
I do have money to give to charity. I am looking at celiac disease. I am not interested in supporting research as much as I am interested in supporting the front line organizations who support people on a daily basis. They are the people making the biggest impact on a daily basis. I like to know an organization before I give. I want to know who they are and what they are about – and to know what they are doing with their money and as importantly if their programs are meeting their goals.

Let me ask some questions now:
1. Do you give to charity? Is it a celiac charity or a different disease community or something else?
2. How do you decide what charity to give to if there are many in the same area?

[lovegrov]

I like GIG (www.gluten.net) but can't say I've done any real due diligence on them. However, when I was trying to learn how to deal with celiac, they were a voice of reason. Cynthia Kupper is the person who worked with Outback and others to come up with a gluten-free menu and GIG started the product certification program and they took over the GFRAP program. Meanwhile, CSA was the organization that used to warn that every other ingredient in the world was dangerous, and a former CSA president also tried his best to sabotage the allergen bill.

richard

[lovegrov]

Are we now requiring membership cards? Does someone need a Celiac handstamp to share perfectly valid concerns about how organizations that are supposed to represent OUR interests are run? I don't have cancer, but I can tell you I have grave concerns over how the American Cancer Society is run. I'm not going to keep my mouth shut just because I'm not part of the club. Last I checked, these organizations are willing to take donations from anyone, which means they should be willing to take questions from anyone, and so should we.
[/quote]

We've always asked people to tell us what their association with celiac is. No, it's not a requirement, but it just makes common sense. And then when somebody's first post is along the lines of truckergordon's, radar goes up among people with years of experience in Internet groups.

richard