Pop Quiz: What Do Your Donations to MDA Pay For?
It’s September, and the Muscular Dystrophy Association is promoting #30DaysOfStrength to raise money this month, as well as hosting countless Fill the Boots around the country. But where does all this money go? Test your knowledge on what MDA does with your donations with these ten true or false questions.
1. MDA pays for wheelchairs and braces
False
Many years ago, MDA provided $2,000 toward wheelchairs or braces (mind you, even the most basic electric wheelchair can easily cost over $20,000). They then cut it down to $1,000, and a few years later they stopped funding these items altogether. They also used to fund $500 for wheelchair repairs. That stopped as well.
2. MDA pays for MDA Care Center visits
False
MDA Care Centers are not funded by MDA. MDA only provides something similar to a sponsorship, where they give existing neuromuscular disease centers a small fee to be able to use the distinction of MDA Care Center. These clinics also see individuals with other conditions, such as cerebral palsy and epilepsy. Visits are not covered by MDA, even if the patient doesn’t have insurance. Years ago, not only were visits for noninsured clients covered by MDA, but an MDA representative would be at each center on clinic days, helping patients utilize other services provided by MDA at that time.
3. MDA pays for research
True — but indirectly
MDA does not have its own researchers or doctors. Contrary to what they might tell you, there is no such thing as an MDA doctor. Research grants are awarded by MDA to researchers already putting in the work at various universities and centers. MDA is basically the middle man for research funding, but some of your donations do go to that.
4. MDA has never stopped funding research
False
In 2020, MDA stopped funding research grants for a few months. Camps also weren’t held due to Covid. They continued to ask for money during this time, even though they weren’t funding anything.
5. MDA still provides their loan closet service
False
The MDA loan closet was a service where you could donate gently used items such as wheelchairs, ramps, vehicle or stair lifts, adjustable beds, etc. and they would be provided to someone in need — usually to someone whose insurance didn’t help with these items. However, as they permanently closed local offices in 2020, they also shut down the loan closets. What did they do with those items? Well, at least according to one former employee who reached out to me, the employees were told by the national office to keep them for themselves or throw them away. I’m not sure if this happened with other offices, but the employees at this one took it upon themselves to donate the items to those in need.
6. MDA took out $10 million in PPP loans
True
While this money — your tax dollars — was supposed to be spent on retaining and paying employees during the pandemic, MDA shut down all local offices and either fired or furloughed employees. Many employees were furloughed for several months and eventually had to find other jobs. According to their tax returns, MDA went from 786 employees in 2019 to 248 in 2021.
By the way, during this same time, they gave former CEO Lynn O’Connor Vos $823,260 for ten months’ work.
7. MDA spends more on research than they do on executive and employee compensation
False
According to MDA’s 2023 tax returns, they made over $56 million in contributions and grants last year. $14,912,477 of that went to research grants, while a staggering $26,112,512 went to salaries, employee compensation, and other benefits. That means for every dollar you donate to them, 44% goes to the executive and employee’s pockets and only 25% goes toward research grants.
8. MDA pays for MDA Camp
True-ish
Like other camps, MDA camp relies on counselors to operate. MDA counselors are all volunteers who don’t get paid a cent to be there the entire week. While there can be some costs associated with camp, some MDA camps are held at campsites that are already nonprofit. That means those camps are basically paid for by the other nonprofit. The costs are minimal and nowhere near the $2,000 per camper as they used to claim. In addition, MDA now offers virtual camp which utilizes the internet. However, they do not help fund a computer, laptop, tablet, or any other assistive device a child would need to participate — even though they highly suggest the child has their own device for the camp experience. They do claim they can lead you to other organizations that can help pay for those things.
In the meantime, several other nonprofit organizations for people who have neuromuscular diseases have started their own camps, after seeing MDA drop the ball on theirs. Many of these groups/organizations were started by former MDA volunteers.
9. MDA is still making payments to the International Association of Fire Fighters
True
Even though the shocking news came out four years ago, MDA continues to make large payments to the IAFF. According to the IAFF’s LM-2 annual report filed with the U.S. Department of Labor Office of Management Standards, the IAFF received $650,000 from MDA between 10/20/22 and 6/7/23. Since 2017, MDA’s payments to the IAFF have exceeded $7 million.
10. MDA has been upfront and transparent about the IAFF payments
False
MDA has been anything but. While many understand it takes money to make money and there are costs to fundraising, even members of the IAFF are wondering what exactly this money went toward, and they’re questioning why these payments are so large. No one can figure out what could cost so much. Of course, MDA could clear this up by telling us why these payments were made. But considering it’s been four years and they’re still keeping quiet, we may never know why so many donations you make to MDA are going to the IAFF.
So the next time you see fire fighters filling the boot, or see Aisles of Smiles signs at your supermarket, or are asked to round up your total to help MDA, think before you donate. With non-existent services, cuts to research, and minimal camp costs, and so many millions in payments to their executives and to the IAFF, you have to wonder who MDA is really fundraising for.
To learn about my history with MDA, please check out my first article “I Supported the Muscular Dystrophy Association All Of My Life. Now I’m Warning Others About Them” or visit my YouTube video.
