Shamrock season isn’t so lucky for the Muscular Dystrophy Association this year.

When I used to volunteer with the Muscular Dystrophy Association, February and March were my busiest months. I was tasked with going to local, regional, and even a few national business executives to talk about how MDA helped people — like me — who have neuromuscular diseases. After a pep talk from the head executive, the businesses would “kick off” their Shamrocks for MDA campaign.

I’m sure you’ve seen the shamrocks at your favorite grocery store or chain restaurant. The person behind the counter asked if you wanted to purchase one as you checked out — $1 for a green one, $5 or more for a gold. They would have a picture of a child with MD displayed, telling you they were raising money to send them to camp.

Here’s a secret for you — your shamrock donation didn’t directly pay for that child’s camp fees. By the time shamrock season rolled around, camp for the year was already funded. One corporate donation to a local MDA camp easily covered all camp costs. My local camp had approximately 50 campers every year. $40,000 would cover the expenses for all of them. One golf tournament could fund at least three years at this rate. Not to mention that MDA would post an Amazon wish list for small camp items, meaning more donations coming in for items that should have been funded anyway.

It doesn’t add up. If a large sponsor covered camp with just one donation, or one event, why did MDA keep asking for camp money? They could literally send hundreds of kids to the local camp with all the donations people thought were going to camp expenses, yet they still had $2 packs of drinking straws on their Amazon list, claiming they needed help buying the items.

So where was shamrock money going? What did your donations actually fund? They were going to overhead costs, which account for 49% of all donations made to MDA. But here’s more of what they did with millions of dollars in donations:

How some of the donations made to MDA were spent.

After their corruption was first exposed in October via The Hollywood Reporter and Yankee Institute (which was corroborated by the U.S. Office of Labor Management Standards filings), MDA went into spin mode, spewing out more propaganda than most politicians. They got a new CEO, new board members (for a board, to my knowledge, that doesn’t include anyone who actually has a neuromuscular disease), and even created a new chief of staff position. Every post you see from them on social media is touting how much they’re helping those with neuromuscular diseases.

MDA probably went into this shamrock season thinking they had swept everything under the rug. They breathed a big sigh of relief. So they started their shamrock campaign and their posts and emails about oh, how wonderful it was that they were “helping to transform the lives of children and adults living with muscular dystrophy, ALS, and related neuromuscular diseases.”

Here’s something they should have known, though — when you’re in the spotlight, you’re also under the microscope. And that’s when more of the truth comes out.

Like this op-ed from March 2. The author spoke to several firefighters, International Association of Fire Fighters union leaders, and IAFF board candidates who were all critical of the donations MDA made to the IAFF. To quote a few:

“We still haven’t heard a valid reason as to why these payments were made from the MDA,” Mitchell said. “Local unions make donations all year long and don’t expect anything in return.”

“Could you imagine that we told the first 50 locals that raised $20,000 each … that the monies they worked hard to raise were actually going to the IAFF for overhead and nothing to MDA? I think we would have a major uprising in our union,” he said. “Our members raised those dollars directly for MDA only for it to be given back to the IAFF.”

And, while this is what one firefighter said about the payments in relation to the IAFF, this is what I’ve been saying all along about the payments in relation to MDA:

“I think if there was valid reason for it, they would be more upfront and would have provided members with that explanation.”

It’s been nearly five months since the news broke that MDA gave millions of dollars to the IAFF, and MDA remains mum.

They won’t tell us why money that was supposed to go to research went to firefighter unions, which even the firefighters find absurd.

They won’t tell us where all donation money is going since MDA is no longer funding research, camp, wheelchairs, braces, clinic visits, or flu shots. They even stopped their loan closet program, which helped clients find gently-used mobility equipment and hospital beds.

They won’t tell us how exactly they are helping their clients during the COVID-19 crisis, even though they purchased ads claiming they are. I have yet to hear from a single client who has heard from MDA unless it was an email asking them to fundraise or tell their friends to watch the ill-advised Telethon last September. MDA could have used this as an opportunity to help their clients with vaccine appointments, or even do something as simple as send out masks. But they have done nothing.

They won’t tell us why they borrowed $6 million from a donor-restricted account.

They won’t tell us why, if things were on the up and up, the payments showed up on the IAFF’s LM-2 filings, but not MDA’s annual 990s (the tax form that ensures a nonprofit doesn’t have to pay income tax).

Firefighters have always been MDA’s biggest supporters. Not only by the money they raised, but by their hard work for the organization. I couldn’t even tell you how many I met during my time with MDA — thousands, I’m sure. They put their heart into helping this organization. After supporting MDA for decades, the fact that they’re questioning these payments should tell everyone how corrupt the organization has become. Firefighters are heroes in our communities, and knowing they were also misled when they had every intention of helping others is just heartbreaking and wrong.

So next time you’re at a checkout and you’re asked if you want to buy a shamrock, just remember where your money is really going.

MDA still thinks they can get away with all of this, but they’re going to need more than the luck of the Irish to help them.

Click here to read about my history with the Muscular Dystrophy Association.




Writer, meteorologist, disability rights advocate.

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Despina Karras

Despina Karras

Writer, meteorologist, disability rights advocate.

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