Where does the money go?

[candycane]

Where does the money that the NMSS raises go?

I know some goes to research and awareness. Does any go to supplement individual needs, or to us as a group, like to supplement exercise classes & things like that?

[MSer102]

I know that the NMSS local chapters have exercise classes and support groups and often equipment lending. Some of them have grant programs for equipment and sometimes simple remodeling for handicap accessibility. You can look for your local chapter online to see what services they offer and when and where. They don't know your there unless you tell them so be sure to call or email your local chapter to get put on their mailing list.

All charities like the NMSS have to file reports with the IRS every year to explain where the money goes. You'll find them on the NMSS website and under > About the Society > Annual Reports.

[Robinsnesth]

There is a site called Charity Navigator that is pretty informative on a large number of non-profit organizations.

[KatieAgain]

I actually received a briefing on it within the past few months. It was sort of dry, but was told they had to cut back on R&D lately, because of financial concerns. They did not cut back totally, just some. I think the majority of the money goes toward awareness, education and patient assistance. That is based on what I remember of the briefing.

Of course, I had to make a snide comment, "I am not walking no more if you are cutting back on R&D." The speaker did not like that.

I think the Society overall does a pretty good job, and they do well for what their mission is, so I cant bash them, but for me personally, I want my money or volunteer work going strictly to R&D. That is just me.

[knuckle]

If you go to the main NMSS webpage, select "About The Society" then "Annual Reports" then "990 IRS Forms" they will show you exactly where the money goes, including the salaries and benefits of executive leadership.

[Jules A]

Of course, I had to make a snide comment, "I am not walking no more if you are cutting back on R&D." The speaker did not like that.

I think the Society overall does a pretty good job, and they do well for what their mission is, so I cant bash them, but for me personally, I want my money or volunteer work going strictly to R&D. That is just me.

I agree with you. It might sound insensitive but I really want the money I donate to the NMSS to go toward research to help either treat or maybe even cure this miserable disease.

Just my opinion but I believe assistance for individuals should come from their own resources, their family's or other organizations like church.

[mjan]

I can appreciate your concerns, but I was at a conference this past March and 4 researchers here in Univ of WI Madison were giving updates on their ongoing research on VIT D, and the brain neuron regenerating.

These researchers told us that all the $$ raised from MS walks in WI is what pays for their research now and without it, they could not continue.
They have lost other grants over the years so truly depend on MS society to keep their research efforts a float.

Jan

[KatieAgain]

Just to make sure that I was not misunderstood. I stated in the briefing I received it was stated the Society cut back on R&D because of finances. They did not cut back totally so some people are still getting grants.

But all three of us, (me, myself, and I) want my money to go to R&D. I want every new generation of MSers to have it better than the next. As I stated in another post, I am not very optimistic about a cure, but I do believe that MS will eventually become quite manageable...just not in my lifetime.

[JerryD]

Since I am weighing in on the money issue, I want to ,selfishly, push for more research for an underserved population, those with Primary Progressive MS.
When was the last time any of you saw a treatment designed to treat that form of MS ? We are treated like illegitimate step children. Always listed in the 'Exclusions' section of most clinical trials.

[KatieAgain]

Since I am weighing in on the money issue, I want to ,selfishly, push for more research for an underserved population, those with Primary Progressive MS.
When was the last time any of you saw a treatment designed to treat that form of MS ? We are treated like illegitimate step children. Always listed in the 'Exclusions' section of most clinical trials.

I don't think it is selfish at all...even though I am RRMS, I would be your biggest cheerleader. I agree there is not enough research on PPMS.

A friend of mine and I were diagnosed 3 days apart. He had PPMS and I RRMS...it was and still is like two completely different diseases.

[Jules A]

Since I am weighing in on the money issue, I want to ,selfishly, push for more research for an underserved population, those with Primary Progressive MS.
When was the last time any of you saw a treatment designed to treat that form of MS ? We are treated like illegitimate step children. Always listed in the 'Exclusions' section of most clinical trials.

Did you ever get a chance to look into this article? I do think it is promising for us all especially those with PPMS, fingers crossed.

http://www.msworld.org/forum/showthread.php?t=127444

[aitch10]

I agree with you. It might sound insensitive but I really want the money I donate to the NMSS to go toward research to help either treat or maybe even cure this miserable disease.

Just my opinion but I believe assistance for individuals should come from their own resources, their family's or other organizations like church.

100% this. I want the money to go towards finding a cure and helping us ALL rather than to help a few people pay their bills.

[Robinsnesth]

Facts are facts....

I'll probably not make many friends by posting this, but here it is anyway:

$452,368 CEO Compensation to Joyce Nelson

Everyone complained when Elizabeth Dole was making in excess of $500, 000 working for a 3 Billion dollar a year charity. NMSS is only a 97 million dollar organization and the CEO makes almost as much?

Yeah, something is seriously wrong in the accountability of the NMSS, sad to say And who is getting screwed, the people with MS, the very ones they are supposed to be trying to help.

****stepping slowly,carefully off my soapbox now****

[MSer102]

$452,368 CEO Compensation to Joyce Nelson

Yeah, something is seriously wrong in the accountability of the NMSS, sad to say And who is getting screwed, the people with MS, the very ones they are supposed to be trying to help.

On the other hand, that's about $1 per person for every person in the US who has MS. I'm certainly not getting "screwed" over $1. Would you donate $1 per year to pay someone to run a foundation that makes sure that there are millions of dollars going to MS research?

[knuckle]

While I think $450,000 is excessive compensation when compared to CEOs leaders of other organizations, say the President of the United States to start, my real problem lies with the incestuous relationship between NMSS and "big pharma". NMSS seems to have little interest in exploring therapies that would not yield blockbuster products for it's corporate sponsors.

Low Dose Naltrexone (LDN) is an example. A low-cost, non-toxic, generic drug that is used by 1000s of MS patients for years, often with excellent results. Plenty of neurologists prescribe LDN for MS. LDN is being researched actively in university settings. LDN has shown positive efficacy in other autoimmune diseases such as Crohn's, Fibromyalgia, Lupus, Psoriasis and Rheumatoid Arthritis. There have been small clinical trials for LDN for MS.

Yet, NMSS expresses no interest in LDN. Why? Because no one can make any money on a cheap, generic drug for MS. A drug that only costs a $1 a day. Every day 100s of people learn the life-changing diagnosis that they have MS, are given a choice of half-a-dozen extremely expensive, often toxic drugs, but rarely any mention of LDN because the neuro has no clinical trial data to reference.

Well, if you can't charge $4000 a month for your MS drug why on earth would a private company invest millions in a clinical trial for LDN? The only people who could raise enough money for a clinical trial to prove LDN efficacy that is now only anecdotally reported by 1000s of LDN users over a decade is NMSS.

How could NMSS possibly come up with that kind of money?

How about a walk? A walk for LDN. If so many MS patients have found LDN so beneficial to managing their MS. That LDN does indeed slow/halt disease progression, reduce MS fatigue, reduce pain and more...let's run a clinical trial. A proper clinical trial that MS nueros can assess LDN efficacy versus other MS drugs.

But if NMSS funded such a clinical trial of LDN vs. Avonex (or any other first line MS drug) and LDN resulted in greater efficacy, what do you would think would happen?

Instead, NMSS ignores LDN. A drug that may be an excellent first-line MS treatment that doesn't carry the significant toxicity risks as well as financial burdens of products from Biogen, Serono, Bayer, Teva, etc,.

There are other low-cost treatments for MS that NMSS shows little research enthusiasm for, such as Alpha Lipoic Acid, N Acetyl Glucosamine, Curcumin, Fumaric Acid, Vitamin D, Cinnamon and more.

My opinion...is it all comes down to money and priorities for NMSS leadership, and the health and welfare of the MS patient is not at the top of their agenda.

(Knuckle steps down from soapbox)