As MDA Executives Line their Pockets, People with Neuromuscular Diseases are Paying the Price.
The Muscular Dystrophy Association continues fundraising with the International Association of Fire Fighters during Fill the Boot campaigns this summer. While we already know why this is problematic, it got me thinking about the impact these donations would have if MDA executives weren’t paying themselves millions of dollars every year.
I’m aware it takes money to make money, and everyone should have a livable wage. But according to their latest taxes, MDA paid out $26,112,512 in employee salaries and compensation in 2023, up more than $2 million from 2022. Let’s assume all 242 employees make the same amount (even though they don’t, since the top eight executives make $2,385,489, nearly a tenth of salaries). That would mean each employee makes over $100,000.
Let’s think about this for a minute. In 2023, MDA had a revenue of $59,437,892. This means that employee compensation accounted for 44% of their revenue. So for every dollar you give them, 44 cents goes straight to their pockets. That leaves 56 cents to go toward research.
But it doesn’t stop there.
There are overhead costs. Fundraising costs. Legal costs. Accounting costs. These costs, and so many more, are taken out from your donations as well.
In 2023, MDA paid out $14,912,477 in research grants. That’s only 25% of their revenue.
So, you’re looking at a tiny fraction of donations actually going to do something that helps those with neuromuscular diseases.
It makes me wonder what kind of impact they could make if they just reversed those numbers — if they spent 44% of their revenue on helping the people they claim to help, and 25% on compensation? It’s a 19% difference.
The most recent information I could find regarding the cost of research was from 2019 and stated that it was $75 per minute. I’m going to give them the benefit of the doubt, though, and bump it up to $90 a minute to account for inflation.
With a 19% increase in research money (or $11,200,035 more), they could have funded 124,444 minutes, or 2,074 hours, of additional research.
They could have paid for every client 18 and under to go to camp.
They could have kept funding wheelchair repairs and helped at least 5,600 wheelchair users.
They could have brought back their flu shot program and provided flu shots for all of their clients who don’t have insurance.
Beginning July 1, many people in North Carolina who have Medicaid are now under managed care and something called a Tailored Plan. Those with extensive health issues, such as certain forms of muscular dystrophy, are under the state’s waiver program in order to access in-home care and are required to get all their healthcare through the Tailored Plan. As of today, my local MDA Care Center is not part of the Tailored Plan network, meaning Medicaid will no longer cover visits there. MDA could start covering MDA Care Center visits again for these individuals and others without insurance. That $11,200,035 would literally be life-saving at this point.
They’ve taken so much from clients. How is that providing hope? How is that providing care?
I know I threw around a lot of numbers here, but the decisions MDA is making with how they spend donations has real-world, tangible consequences. Yes, breakthroughs are happening every day — and MDA will make certain you know that come September, when they become nostalgic for the Telethon and hope you will too — but MDA is not the only one funding the research. Just because they “celebrate” an FDA approval for a new treatment doesn’t necessarily mean they actually funded it.
Think of what they COULD do if they did the right thing, though. Think of all the lives they actually COULD change.
But considering they cut these services all the while giving themselves raises, it seems like lining their pockets is more important to them.
