MDA logo with strikethrough.

This is the time of year when many nonprofits ask people to open their hearts, and wallets, and donate to a worthy cause. Most nonprofits will use those donations for good, to actually make a difference and help those in need.

The Muscular Dystrophy Association is not one of them.

I was an MDA client and volunteer for around 30 years (read my story about why I left MDA here). They went from a wonderful organization that helped fund research, clinics, wheelchairs, braces, and flu shots to an organization that now funds…

Well, nothing.

I guess that isn’t entirely true. Beginning in 2008, and occurring annually every year from 2015 to 2019, MDA contributed millions of dollars to the International Association of Fire Fighters. This is according to US Office of Labor-Management Standards filings from the IAFF.

MDA has been repeatedly asked to comment on these findings for weeks, but they refuse to tell us why they gave this money — money that was supposed to be used for research — to the fire fighters union. They actually gave more to the IAFF in 2016 than they did to the recipient of their largest research grant. If this money was owed to the IAFF in some way for fundraising purposes, why didn’t it appear anywhere on MDA’s tax filings as deductions?

Another item MDA funded with your donations — the salary of the former (as of about two weeks) CEO Lynn O’Connor Vos. While the organization was asking for donations, MDA was paying Vos over half a million dollars a year.

Evidently, it takes a lot of money to run an organization to the ground.

The extent of MDA’s mismanagement and lying by omission (or sometimes straight-out lying) is mind-boggling. Before their Kevin Hart MDA Kids Telethon this year — which was protested heavily by those with neuromuscular diseases and disability advocates with #EndTheTelethon trending on Twitter — MDA announced they were pausing the funding of research grants. They went into the telethon telling donors they were helping pay for research, when in reality they weren’t funding anything to provide help for their clients.

Their newest attempted money grab comes just in time for #GivingTuesday. With the telethon a month behind us, and the well-hidden announcement of the research funding pause occurring before that, MDA has started an ad campaign stating “COVID-19 won’t stop us”, along with the photo of a young boy in a wheelchair and “Kids with neuromuscular disease need your help more than ever.”

And you know what? That’s true. Kids, AND adults, with neuromuscular diseases DO need help more than ever as we try to navigate a pandemic and stay healthy. We are high-risk and any exposure to the virus could be deadly. But what exactly is it that MDA is doing to provide support?

They’re not paying for clinic visits, or any type of doctor visits, to help people stay healthy.

They’re not paying for flu shots, which are vital to those with neuromuscular diseases.

They’re not checking in with their clients to see if they need anything.

They’re trying to convince you they care about their clients during the pandemic, when in reality they stopped caring and stopped supporting them long before anyone had even heard of COVID-19. They’re using the pandemic as a convenient excuse.

What DO they care about? They care about paying the IAFF. According to The Wall Street Journal, the IAFF president, Harold Schaitberger, is already under investigation by the FBI, the US attorney’s office in Washington, and the Labor Department. What kind of deal do MDA and Schaitberger have going on?

They care about paying their debts. According to this Hollywood Reporter article from October, MDA has borrowed millions of dollars from donor-restricted funds to cover operating costs. Not only that, but “[MDA] had a deficit fund balance of more than $700,000, meaning it owed more to outside parties than the value of its assets.”

They care about their image, which is why they’re in crisis mode right now. They quietly ushered in a new CEO, Donald Wood, without any of the same fanfare Vos got when she was hired. They’re hoping to sweep everything under the rug and act like they’re actually serving their clients.

But it’s too late to repair their image. Their greed has gone too far and they have lost their way, as well as the respect they had with their corporate sponsors and thousands of clients, donors, and volunteers. I don’t know if what MDA is doing is illegal, but it’s highly unethical.

The Muscular Dystrophy Association will not survive much longer. And it shouldn’t.

If you plan to donate during #GivingTuesday, or any time in the future, please consider other organizations that are transparent, honest, and actually care about those they serve.

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Writer, meteorologist, disability rights advocate.

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Despina Karras

Despina Karras

Writer, meteorologist, disability rights advocate.

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