NMSS

[Sunshine]

I was curious about the structure of NMSS since several here had wondered about whether they help real patients more directly.

Here is a link to their income and expenses. The CEO makes over 400K:

https://www.charitynavigator.org/ind...ary&orgid=4189

Forbes also rates it #63 on top 100 charities
https://www.forbes.com/companies/nat...rosis-society/


https://www.forbes.com/companies/nat...rosis-society/

[Howie]

So if they found a cure, JUST the CEO would be out of $400,000 a year. That wouldn't exactly inspire the whole organization to find a cure, now would it?

[agate]

In the Forbes chart there are a few footnotes in miniature print. Among them there is this:

• Results may be skewed due to unconsolidated data of national and affiliate groups, rounding or incomplete information

I don't know much about how charities operate but they seem to have a fair amount of leeway in terms of having to be accountable.

[Howie]

A well planned scheme. I wonder if we can be a part of it? I would work really hard for only $100,000 a year.

[agate]

I sometimes wonder if the leadership posts in a charity organization like the NMSS are plum jobs that are given out to people, maybe as political rewards. The president of the NMSS doesn't usually have much of a connection with MS, or at least that's how it's seemed to me.

This story goes way back nearly 30 years but it's an example of what I mean. Ursula Meese, the wife of then US Attorney General Edwin Meese, had had a few jobs--including being the Easter bunny for the White House Easter egg roll--but I can't see that she was especially well qualified for the job:

http://www.nytimes.com/1988/04/18/us...-scrutiny.html

I didn't mean to turn this into a political rant but I really have my doubts about the usefulness of the MS Society to people with MS. Maybe it's a disease they are concentrating on eradicating and all of their effort goes toward research? In that way they're "helping" us but what about our daily lives as the years go by and the MS doesn't go away even though it might have been "modified" by one of the MS drugs?

BBS, thank you for digging up the information. I've often wondered how the finances broke down but didn't know how to find out.

[Jeanie Z]

:) I ran a weekly MS support group for the NMSS for eleven years. I found out then that the top workers there got a lot of money. I quit donating to them them.

Now I give to the Salvation Army or Veterans. The head of the Salvation Army makes $13,000.00 a year. Most of the money goes to helping the communities.

The MS Foundation did pay for our group to have dinner one December. The NMSS got mad that we took help from them. Curing MS is not any of their real purposes. Jeanie :)

[Howie]

$13,000 is more like it. It inspires me to give, not to a CEO to buy a new home, but the real man for giving his time for a great cause.

[agate]

Years ago I had a very brief part-time job, a couple of hours a week, helping a woman with MS who needed to have her mail gone through, bills paid, checking account balanced, etc. She was in her mid-60s and in an "adult foster home" that was dismal. She was apparently alone, or if she had family, they were nowhere in sight.

I helped her maybe twice, and then one day when I arrived she was being loaded into an ambulance and taken to the VA Hospital--where she later died.

Anyway, during the short time I was working for her (she was bedridden but could talk well), she told me that she'd been an office volunteer for the local chapter of the NMSS for many years, and in fact when I went back through some old newsletters of theirs, I found her name on them. But in her final time the MS Society she had served for so long was nowhere in sight either. She felt forgotten and underappreciated, and I found out just how much use the MS Society was likely to be when I heard her story.

[Howie]

That's so not right. It happens way too often. Folks like her, willing to give her time and effort to others, deserves to get the same from others when she needs it, not to be shut away someplace.

[agate]

She seemed like a very nice lady, and she was putting up with what MS was doing to her very stoically.