Where does the CAA

[bakercape]

get the bulk of it's money from? I have seen an accounting which shows most of it's money comes from a few large anonymous donors.

As a group which advoocates for us and is representing the CFS community at every decision making and educational meeting I would think there is an obligation they have to be transparent on where there funding comes from so we know there is no conflict of interest.

Politicians list who and where they get there money from why not a non profit.

I am issueing a challenge. If anyone can show where the CAA gets most of it's money from. Who it's big anonymous donars have been the last few years I will give 50 dollars to the CFS/ME advocacy group of there choice. You have to have some kind of proof besides a say do though.

 

[CBS]

THIS IS A CHALLENGE TO THE CFIDS ASSN OF AMERICA !!! If you won't say who your big donors are, we will all know you are trying to hide something from us.

Are you asking for information that is more specific than is posted on the CAA site under structure and funding: http://www.cfids.org/cfidslink/2010/010607.asp#structure ?

I have given them about $250 this year. I can pull the receipts and get you a more exact figure if you want. I also gave the WPI $100 last December. I'm not a representative of the CAA but I do support their research efforts.

Hey Jennie, I looked at the tax records for 2009. You are not being paid nearly enough!

 

[Hope123]

I do not think it is fair to ask the CAA to disclose the names of donors who wish to remain anonymous.

If you look at almost any non-profit organization from your food bank to the theater company, there are usually a fair number of donors who wish to stay anonymous and sometimes, "anonymous" is the donor(s) who give the most. My relative used to work in non-profit fundraising with individual giving and there are people who are humble and do not want to toot their own horn when giving a large amount. Add in a disease that has a fair amount of stigma and there are likely people who do not want their name attached for social/ financial reasons (e.g. they could lose their job) but want to support the CAA. It would be the equivalent of LGBT groups "outing" people without their consent. Some people might choose not to give to charities that force them to list their names.

On the institutional/ corporate side, I believe there might be different rules and I would expect the CAA to list those donors.

 

[CBS]

Yes. More specific information is necessary. The CAA's 2009 tax form says they got more than 1.5 million dollars. Who were the donors? Who are their donors in 2010?

Gloria,

Thanks for taking your foot off of the CAPS key. I'm much more concerned with where the money is going. Their expenditures are clearly outlined including salaries and six grants in 2009.

I'm curious about your statement "If you won't say who your big donors are, we will all know you are trying to hide something from us." They clearly state that what funds they received from governmental agencies. I wish they were getting a lot more from the CDC, NIH, FDA, NHLBI, etc.

I too would be interested in knowing who the large donors were (maybe there's a celebrity with a family member that we can cajole into being a a spokesperson?) but if I don't get a list (for whatever nefarious reasons) I am content to know where the money is going and to not use inferences of hiding ulterior motive to try and discredit the CAA an intellectually dishonest maneuver.

In general, I didn't have a problem with bakercape's original post (neither did I feel compelled to respond). There's a big conversation about advocacy that needs to happen and it could be productive if we'd just lay off the accusations and try asking questions in a reasonable tone (and that means posts that don't start with "THIS IS A CHALLENGE..." You're right, you aren't interested in a conversation. You're venting and when you go that route you're not trying to engage in an exchange of ideas, information, or anything constructive.

 

[jace]

I think we have every right to ask where contributions greater than $1,000 come from. The sources of major financing of any public or charitable organisation should be a matter of record.

In the UK recently, we discovered, for instance, that the big donors of the Labour Party (in power at the time) were being rewarded with honors. Call me cynical if you like, but large donors do have influence over policy.

I agree that the financing of the CAA, and any charity, should be open to scrutiny. Jenny, where do the big bucks come from?

 

[Roy S]

The CAA used to list all of their donors unless they asked to remain anonymous. They were all listed in the annual reports in categories from $50 to over $50,000. They just responded to a question about this subject on their Facebook with typical spin.


I don't think there can be an open discussion of advocacy on this website.

 

[Frank]

Some of you come to Belgium or the Netherlands, we don't have any kind of organisation like the CAA..
Also if you would be a huge donor would you like to have a kind celeb. status amoung patients? I'm aware
that some kind of corporate donors can do harm, but i haven't seen much of that yet.
I judge the CAA on their actions..

 

[BEG]

If the choice of anonymity is taken away, there will be fewer donors. Watch what you ask for.

 

[eric_s]

I agree with Frank and Brown-eyed Girl. I am curious too, who the big donors are, but if you took away the possibility to donate anonimously, you might lose donors. Probably we have to live with that uncertainty. In politics it's a different thing, of course.

 

[bakercape]

I stared this

thread because I really feel uncomfortable with a group advocating for myself and all the other people with ME/CFS as far as funding goes, nominations to the CFSAC and research directions without knowing where there support comes from.

The CAA is saying they are advocates but without knowing where most of there money comes from how can I know what influencing forces the people or organizations giving this money are having or what stipulations or promises are perhaps being made as conditiions for giving the money.

I believe all non profits that are advocacy groups and politicians should have to list where all there money comes from. If the CAA was just a research organization then I would not care where there money came from.

But if they are going to act as an influence over government decisions and take government money from the CDC to educate our doctors that we see for treatment then I feel then we have a right to know where all there support comes from.

We deserve that transparency if they are going to be that much of an influence in our lives, doctors education and disease.

If they refuse to be totally transparent to protect donors privacy then I really feel they should just be a research organization and not an advocacy and educational group.

 

[CBS]

A constructive discussion - Is it possible on the web?

I don't think there can be an open discussion of advocacy on this website.

I agree but I doubt that we share the same view of the cause.

I've wanted to have a real discussion about advocacy (and not just screaming at how wronged we've been by the CAA) for quite a while. Personally, I think that the CAA is trying to do too much with far too little. I'd like to see more than one advocacy organization. I just can't see a group as diverse as all ME/CFS patients being satisfied with one style of representation. The CAA has been around for a while. In some circles that warrants a seat at the table (as well as a record).

I'll start a new thread leaving out the implied swipe at the CAA and let's see if we can have a real discussion about advocacy.

http://www.forums.aboutmecfs.org/sh...e-a-real-discussion-about-on-the-web&p=126613

 

[Rooney]

This is legally a charitable organization and I imagine it would be unlawful to release the names of their donors. As a former fundraising consultant I know that wealthy donors keep their names private so that other charities will not hound them for money. It's also a modesty thing. In the Jewish faith it is the ultimate gift to give to a stranger anonymously.

I and my family have given to the CAA and WPI. The CAA is not a political organization which would abide by different donor rules.

 

[bakercape]

but

I and my family have given to the CAA and WPI. The CAA is not a political organization which would abide by different donor rules.

We are very much in a political struggle with our illness . I would argue that political support is even more important than medical and has been for a while.

The CAA is representing us at congressional meetings. They are meeting with staffers, senators and congressman. They are in fact acting as our defacto political organization. It may not be about republicans and democrats but it is our lives.

It seems we get represented by them politically by default. And since there is no other national advocacy group politicians think they represent all of us and our views when they don't.

They should not even really be calling themselves the CFIDS association of America. I know lots of Americans with CFS that don't feel represented by them and don't want there form of advocacy. They shoould jusy call themselves the CFIDS association.

 

[*GG*]

I think we have every right to ask where contributions greater than $1,000 come from. The sources of major financing of any public or charitable organisation should be a matter of record.

In the UK recently, we discovered, for instance, that the big donors of the Labour Party (in power at the time) were being rewarded with honors. Call me cynical if you like, but large donors do have influence over policy.

I agree that the financing of the CAA, and any charity, should be open to scrutiny. Jenny, where do the big bucks come from?

We might have a right to ask, doesn't mean they have to respond. Like some people are suggesting, perhaps the large donors want to remain anonymous. If them outing who these big donors are therefore "getting rid of" the big donors. I am not for that! They might not be perfect, but 1 of our best advocates that I am aware of.

I used to donate on a monthly basis until I ran into financial difficulties.

 

[jspotila]

The CFIDS Association does not publish or share its donor list in accordance with the current privacy policy. The CDC contracts for public awareness and provider education are both concluded and closed. The Association communicates extensively with the CFS community regarding the content and results of our research and public policy programs. There are no hidden agendas, devious cabals or nefarious deeds afoot.

 

[xrayspex]

Jspotila (Jenny is it?) say I don't like to jump on any sides with some of the internal cfids poltical issues because don't feel I have enough info. but perhaps you could answer one thing for me that I had heard from a reputable source (not on the forums), do you know why Susan Vernon apparently went along with Reeves using psych patients for his 2003 study on "cfs"? It was before she was with CAA I believe. That is one thing I know about that gnaws at me and confuses me on where I want to donate when deciding for cfs/me.
thanks!

 

[bakercape]

The CFIDS

The CFIDS Association does not publish or share its donor list in accordance with the current privacy policy. The CDC contracts for public awareness and provider education are both concluded and closed. The Association communicates extensively with the CFS community regarding the content and results of our research and public policy programs. afoot.

The provider education program seems to expouse the CDC's views on CFS. Thanks for nothing on that.

As far as the association communicating extensively with the CFS community I don't know how that is happening when as the CFIDS association has educated everyone there are 1-4 million people in the U.S. with ME/CFS and the CFIDS association has about 2000 members last I heard. I guess the other possible 3,998,000 people may never get the communication.

 

[Cort]

Jspotila (Jenny is it?) say I don't like to jump on any sides with some of the internal cfids poltical issues because don't feel I have enough info. but perhaps you could answer one thing for me that I had heard from a reputable source (not on the forums), do you know why Susan Vernon apparently went along with Reeves using psych patients for his 2003 study on "cfs"? It was before she was with CAA I believe. That is one thing I know about that gnaws at me and confuses me on where I want to donate when deciding for cfs/me.
thanks!

All the patients for most CDC studies were done using random sampling techniques. The theory behind is actually not bad - it assumes that different sets of CFS patients end up at different doctors. In this scenario patients with more psychological problems might end up being seen by Dr. Wessely - which could contribute to the positive CBT results coming from those types of practitioners.

In random sampling you sample a large population and pull CFS patients out of it randomly - thus hopefully bypassing this problem. Suzanne Vernon was the lab chief at the CDC. If you want to see what she did there check out the Pharmacogenomics project - a very innovative blend of clinical data, genetic, gene expression and lab data - http://aboutmecfs.org/Rsrch/PharmaOverview.aspx. Her approach was basically abandoned after she left the CDC.

 

[Cort]

We are very much in a political struggle with our illness . I would argue that political support is even more important than medical and has been for a while.

The CAA is representing us at congressional meetings. They are meeting with staffers, senators and congressman. They are in fact acting as our defacto political organization. It may not be about republicans and democrats but it is our lives.

It seems we get represented by them politically by default. And since there is no other national advocacy group politicians think they represent all of us and our views when they don't.

They should not even really be calling themselves the CFIDS association of America. I know lots of Americans with CFS that don't feel represented by them and don't want there form of advocacy. They should jusy call themselves the CFIDS association.

When you say that they represent us almost by default I think you're right! For whatever reason nobody else in the vast US landscape has tried to step forward.

I think it's inexplicable; there's a chunk of CFS patients who are either not happy with the CAA or would like another approach yet there has been no almost no action until recently.

For myself I really would like an advocacy group to step up that is more aggressive - more ACT UP-like. I think we really need that - I think we really need a kind of one-two punch; I think a group like that would make the CAA more effective, actually. I would have thought that given some of the angst out there SOMEBODY would have shown up...but the field has been ceded to the CAA. Maybe the Worldwide Patients Association (talk about representation!) will be that group - I hope so.

That's certainly not the CAA's fault! They're not keeping anyone out - they're just doing what they're doing.

 

[Cort]

The provider education program seems to expouse the CDC's views on CFS. Thanks for nothing on that.

You might have missed the fact that the CAA stopped participating in that provider education program because it was too conservative and built a physician education program using Dr. Bateman and Dr. Lapp. Its very different from the CDC's toolkit.