Who Benefits?

Who Benefits Enough from What CAA does to Want to Give them $1M per Year?

I find the whole anonymous donation thing very strange. My Dad was an executive director of a non-profit recently and with them and everywhere I've ever interacted with non-profits, they make the list of donors very prominent as a way of saying thank you to them. And they will list anonymous donors as "anonymous" on the donor list under a dollar amount range (eg. $100,000- $250,000, then a list of the people who gave in that range including 'anonymous' if any) and they usually only make up a pretty small percentage of big donors. Rich people who give a lot of money to a good cause that they could have spent on themselves usually want to be recognized for doing such a good thing.

If you walk into the Metropolitan Museum of Art, for example, straight ahead on the wall are chiseled the names of dozens of the biggest donors including a very few 'anonymouses'. My old friend's Dad donated $100M and got a wing named after him. (I no longer am in touch with this old friend, or I would ask him to give to WPI) Big donors get their name all over college buildings and graduate schools named after them. Look at the Whittemore Peterson Institute.

In NYC, where I'm from originally, there is a whole circuit of fundraising parties where people pay thousands of dollars each to attend a party. Most donors would rather go and celebrate and be recognized for donating than to give anonymously. It's considered probably the main way to 'rise in society'.

That may sound ridiculous but for a lot of people donating a lot of money and going to these parties and being on Boards of Directors of non-profits is the way to be in the world of the rich socialites. For example, Paul Newman was on the board of my Dad's non-profit. People wanted to be recognized as donors so they could hobnob with a celebrity and with prominent business people who might be able to help them network.

So the fact that the donors to CAA don't want to be named is very strange. What are the plausible and probable scenarios? The vast majority of patients, at least the ones who participate on ME communities on the internet, are extremely dissatisfied with CAA. The average pwME doesn't have any spare cash to donate to a charity, even if he loved it. The CAA revenues are now about $1M per year, down from much more over 20 years. Let's say that there are 1,000 pwME who donate an average of $50 per year; that's $50,000. They get some money from a bike race, say $10,000. They get some money from the state of NC, say $20,000. Add those, it's $80,000, round up to $100,000 and we still have $900,000 unaccounted for.

It's unlikely that all this money comes from one eccentric donor who is extremely wealthy, is out of touch and thinks CAA is that deserving. Let's say there are four people each donating $100,000 and twenty people each donating $25,000. Are there really 24 people out there who have ME or whose relatives have ME that would donate that much to an org that is so disliked by patients?

Even if you are one of the very small percentage of people who are not dissatisfied with CAA and you have substantial money to give, wouldn't you give most of it to WPI? or PANDORA or one of the good state orgs? Why would you give tens or hundreds of thousands to CAA when it could be better spent by WPI?

Do all twenty-four of these people really want to be anonymous for doing such good deeds? That seems very unlikely to me. pwME tend to want to socialize, share and bond with each other, I think, since we are so misunderstood and treated badly by a lot of the rest of the world. And, though there are many pwME, it seems to me that the involved people tend to be a small world, since there are not a lot of doctors, scientists, philanthropists and celebrities involved. So it seems like the big donors would be out and involved with the 'community' like the Whittemores are. Or if they aren't, it would be obvious who these people are.

Laura Hillenbrand is supposedly a significant donor. That's one. OK. Who else?

Things seem fishy to me. How does CAA get $1M per year? Who is the satisfied customer(s) who think they are worth the price? Not patients I would think. Well who benefits from the way CAA acts? Insurers, NIH and CDC. Obviously these entities would want to be anonymous if they donated. What do people think?


I can only agree.

What we need is a new advocacy charity and who better than the WPI to take over this role?
Some things to consider:

Not everyone capable of making substantial donations to a charity wishes to be identified as having the means to do so. Privacy may trump considerations of ego etc.

Some of us while very unhappy with many aspects of the CAA still contribute as a way to stimulate CFIDS research. Last time I earmarked my contribution so that 50% was restricted to directly funding extramural grants. One reason that the CAA has started focusing on research is that donors like myself restrict our support to funding research. The second a well run organization starts a fund for general funding of CFIDS research in a systematic way, my money will go to them.

Blog entry information

Last update

More entries in User Blogs

More entries from justinreilly