Donating to MS: Where Does the Money Go?

Ed Tobias avatar

by Ed Tobias |

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You’ve just “biked for MS” or your friends have just “walked for MS” and they’ve collected a lot of pledges. Maybe you sent out letters to your friends asking them to donate a little cash to help find a cure for this disease that has impacted our lives.

Have you ever wondered where that money goes? What is it used for?

A couple of weeks ago, I noticed a post from someone online who was concerned that some of the money she raised for a Bike MS event had been used to cover the cost of producing the event rather than for research into MS. “Isn’t that what the registration fees are used for?” she wondered. She didn’t think that using donated money to cover production costs was the right thing to do.

I wondered, too. So, I reached out to Eileen Curran, who is the senior director for communications and public relations at the National Multiple Sclerosis Society to ask about this. This is her email response:

“While event expenses can exceed the registration fee revenue, our average expense for Bike MS events falls well within the industry standard. Additionally, we seek sponsorships to help support our events and mission. At Bike MS, we provide all participants with an exceptional event experience through a well-supported route, transportation, meals and more.”

OK, but I still wasn’t sure about that expense question. So, I turned to Charity Navigator, an organization that’s been rating the financial health, accountability, and transparency of charities for more than 15 years. (The ratings are based on the Internal Revenue Service’s Form 990, the form that tax-exempt charities are required to file.) Charity Navigator rates the National MS Society at three stars out of four. To compare, the Alzheimer’s Association also rates three stars. The American Cancer Society rates only two.

Where does the NMSS money go?

According to Charity Navigator, in FY 2015 (the most recent year for which it has information) the society spent 57.5% of its income on research and fellowships, 24.6% to help local chapters, and 10.4% to provide help directly to MS patients, or to programs that help them. That adds up to 92.5% of the society’s income being funneled back, in some form, to help MS patients.

What about local chapters?

Each NMSS chapter sets its own entry fees for its events, such as Bike MS, so the percentage of event costs covered by these fees can vary. There also can be a fairly significant difference in fiscal acumen from chapter to chapter.

For example, the Charity Navigator rating for the Greater Carolinas chapter is four stars, as is the rating for the mid-Florida chapter. But the mid-America chapter, in Kansas City, gets only two stars, and the Northern Florida chapter gets only one star.

You can scroll through a full list of ratings for multiple sclerosis organizations, including the Multiple Sclerosis Association of America and Can Do MS, here.

Should she continue to raise donations?

So, was the woman who asked the question about how donations were being spent right to be concerned? Sure, she has a right to know. But was she right to think that the money she raised was being misspent? I don’t think so.

I’m a fan of the NMSS. I’ve helped raise money for it. I’ve supported friends who participated in Walk MS events. My son proposed to his wife after she and her mom completed a Walk MS event several years ago.

We need research into MS. We need accurate, unbiased patient information about drugs, rehab, how to live better with MS, and a ton of other services that the National Multiple Sclerosis Society provides. And if it means that some of the money I’ve helped raise needs to be used to help offset the cost of running an event, I’m OK with that.

On the other hand, let’s hold accountable those few chapters who, according to Charity Navigator, are at the one- and two-star level. If one of those chapters is in your area, think about becoming involved with it and helping to make things better.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Austen Hawkins avatar

Austen Hawkins

So only 7.5% goes to NMSS administrative costs? That sounds way too low, and it should probably be higher so that there's more money to help people with MS.

That seems counter-intuitive on the surface, but you have to think a couple of steps ahead.

Let's say 0% goes to administrative costs. Well, at that point, you don't *have* a NMSS, except what unpaid volunteers are able to cobble together. Unpaid volunteers certainly wouldn't be able to orchestrate nearly the same scope of fundraising and advocacy programs that the NMSS does today.

Assuming most of us agree that 0% doesn't cut it, what does? 1%? 7.5%? 20%? 50%?

The more you spend on administration, the higher wages you can pay the staff at NMSS. If you offer higher wages, guess what happens? You get more competition for the positions, of course. Which means you get better-performing people doing the job of raising money for MS and doing advocacy. Which makes the total *size of the pie* bigger, because they're more effective at doing the job of raising money! Successful companies pay their employees more money precisely because they're worth it. They bring in more revenue for the company.

Let's play a numbers game to illustrate. If 7.5% administrative overhead results in those employees bring in $100M per year (completely speculative number), then it costs $7.5M to make $92.5M for people with MS. But suppose spending 15% on administrative overhead results in those employees bringing in $150M per year. Then it costs $22.5M to make $127.5M for people with MS. End result? People with MS get $25M *more*. Overhead is higher, but the *pie* is bigger because of that, and the end result is people with MS benefit *more*.

So put your thinking cap on before you criticize a charitable organization like the NSMM for having administrative overhead costs. They might not be high enough to give you the help you need.

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Austen Hawkins avatar

Austen Hawkins

*correction: $35M more in my example. Mistyped.

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Lee Jay Gardner avatar

Lee Jay Gardner

Thanks for taking the time to comment on this in a dollars and cents content. Helps to put things into perspective.

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Dean Tolley avatar

Dean Tolley

The CEO of any foundation fund should no receive over $500,000 per year.

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Anita Kaye Beck avatar

Anita Kaye Beck

Hi my name is Anita Beck. I have MS. I went Thursday to be fitted for my new power chair. I have insurance through my husbands work that may pay for the chair or at least part of it but not the lift to put on my vehicle to carry the chair. I know they are really expensive. With me being on disability my funds are limited. Do you know who I can contact to get help in purchasing a lift for myself?

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Ed Tobias avatar

Ed Tobias

Hi Anita,

I'd suggest that you check with your local chapter of the National Multiple Sclerosis Society or with the Multiple Sclerosis Society of America. They may have programs to help.

Good luck,

Ed

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Doug avatar

Doug

If you add administrative expenses and fundraising expenses, the total % is 23.3.
This is straight from the Charity Navigator.

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Beth Dennis avatar

Beth Dennis

I have 2 nephews with MS. So I really like to donate BUT, I hate receiving labels, etc, along with the request for money. I do not want my hard earned money paying for things like that. I have already guestioned this practice, even saying that I would no longer donate, but still get this crap in the mail.

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Ed Tobias avatar

Ed Tobias

I agree with you, Beth. However, I've never received this kind of junk from an MS organization. Which one is sending labels, etc?

Ed

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Ben Archer avatar

Ben Archer

In my opinion, the National Multiple Sclerosis Society is a very poorly run organization. I prefer to support local MS patient advocacy groups in my area.

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William J. Bates avatar

William J. Bates

my question is simply this: I want to donate to the MS organization that does the most medical research to find a cure for MS. A lot of organizations have MS in their names, but who really does the best job of finding a cure. I've checked Charity Navigator and can't find a definitive answer. My daughter has MS and I want to help find a cure for this painful disease. I am interested in your thoughts on the best charity for medical research.
Thank You
J. Bates

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Ed Tobias avatar

Ed Tobias

Hi J,

The two major MS organizations in the US are the National Multiple Sclerosis Society and the Multiple Sclerosis Association of America. The first supports a lot of research into treatments and a cure. I'm not sure how much research the second supports but they provide a lot of free MS tools, such as cooling vests, for people who can't afford them. Take a look at their websites and see what you think.

I hope that helps a little.

Ed

Reply
David Hake avatar

David Hake

If so much money donated continues to go to research of new medicines (that don't cure MS) but patients still have to pay $5,000/month for the medication?

People that donate feel that they are helping a friend who has MS, but in reality, they are giving money to drug companies so they can create yet another 'disease modifying' drug that that they can turn around and make a killing off of.

When the MS Society starts paying for those drugs and pays for equipment that patients need for mobility... Then... And only then... Will I tell people they are doing a good thing by donating to the MS Society.

My wife has MS and the only help she has received from the MS Society was a 'one time' reimbursement of $250 for a portable AC unit to keep her cool. She only can apply once... But yet drug companies get $5,000/m from just about every MS patient out there... And it only slows down the progression.

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