Child holding a jar with change in it and a label that says “donate”.

MDA Update: Still No Answers and Even More Corruption.

It’s been over seven months since news first broke of the shady deals between the International Association of Fire Fighters (IAFF) and the Muscular Dystrophy Association. The IAFF’s LM-2 government filings indicated over $6 million in payments FROM MDA to the IAFF between 2016 and early 2020. Interestingly, these payments were not included in MDA’s own filings.

If these payments were for a legitimate purpose, then why aren’t they on MDA’s 990s as fundraising expenses? And why do MDA executives still refuse to comment or clarify what this money was actually used for?

Of course, we know it can take money to make money. We know there are costs involved to fundraising. But that brings us to another question.

According to the IAFF, there are 1.1 million firefighters in the US. IAFF only represents about 300,000 — less than a third of them. How is it that MDA only made payments to the IAFF when the majority of the fire fighters participating in Fill the Boot aren’t even associated with the union? Why aren’t the non-union fire fighters getting “contributions” for their fundraising?

MDA knows word has gotten out. They know they have lost both individual and corporate sponsors because of this scandal. Yet, they’re shameless enough to double down and ask for “virtual” Fill The Boot volunteers.

Facebook post from MDA chapter, asking for Fill the Boot volunteers.

This comes as many IAFF firefighters themselves have questioned the payments.

The latest MDA money grab is asking for donations for “virtual” MDA camp. According to MDA, camp was cancelled last year and this year due to COVID-19, which was a wise decision on their part. They instead transitioned to “virtual” camp by using streaming services and having online games for their campers. While not ideal, and going against their usual claim of “MDA camp is a great way to get the kids off video games for the summer,” it was something.

But here’s why asking for donations for virtual camp doesn’t make sense.

MDA used to say camp cost $800 per camper. Nearly all meals at in-person camp were covered by restaurant sponsors, and small items like toys were covered by people donating to their MDA Camp Amazon wish lists. Then, inexplicably, the amount went from $800 to $2,000.

Let’s do some math.

MDA claims they have approximately 3,000 campers every year, nationwide. At $2,000 per camper, we’re looking at $6,000,000.

(Doesn’t that number sound familiar? Isn’t it funny how that’s about the same amount MDA “contributed” to the IAFF?)

MDA implies they have their own special platform for virtual camp. However, they use existing platforms like Microsoft Teams, Twitch, Facebook, etc. They don’t pay for the platform.

MDA also does not pay for internet access to participate in camp. What about kids who don’t have internet access at home? They’re assuming everyone does, and that’s a very privileged way of thinking.

Many people with forms of MD, including kids, have a hard time using computers and gaming consoles due to the limited mobility and strength in our hands. We usually have to be set up with adaptive keyboard, trackpads, and adapters in order to play any type of game or even type a document or homework assignment. But when MDA was asked if they would pay for adaptive keyboards or controllers, they said they could try to help find outside financial aid to cover these items if needed. So the answer is no — MDA does not pay for these items.

In fact, other than sending the kids a camp t-shirt, there is no evidence that MDA pays for anything else “camp” related.

Think of how many kids want to participate but literally can’t without the proper equipment. In-person camp helped show kids they could do anything. Virtual camp brings limitations.

So what’s MDA doing with all the money? Well, they continued their payments to the IAFF last year while they had paused funding research. Also, it was interesting to see an MDA executive posting photos of their family traveling all over the world on social media. Their salary is funded by donations — the donations that are supposed to help their clients and their families. And they recently started a major online ad campaign with ads popping up telling you “Transform lives for just $19 a month.”

Funny, they never mention HOW they actually transform lives.

The sad fact of the matter is MDA has stopped helping its clients. Their #1 goal is now making money to pay their executives, the IAFF, and the millions of dollars in debt they owe. And they can only do that by trying to salvage their former image and by using semantics to make people think they still pay for what they used to fund in the past. Next time you see an MDA ad take a moment to REALLY read what it’s saying. See how they word things especially well to cover the fact that they’re not actually doing what they say they’re doing. It’s really a clever game they’re playing — they’re putting a lot of effort into deceiving donors.

There currently aren’t any plans to restart in-person camp, which is a shame. Camp is a wonderful experience and helps provide children with neuromuscular diseases freedom and independence for a week. It’s also great for parents and caregivers, because they get a little break too. But right now, MDA virtual camp doesn’t provide anything other platforms don’t currently provide, and they’re making the public think it takes millions of dollars to put on what’s basically a free event.

Let’s see how MDA handles camp next year.




Writer, meteorologist, disability rights advocate.

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Despina Karras

Despina Karras

Writer, meteorologist, disability rights advocate.

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