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  • Writer's pictureDespina Karras

I Supported the Muscular Dystrophy Association all of my life. Now I'm warning others about them.

Every year around this time, people begin thinking about making charitable contributions. Maybe the holiday season makes them feel generous. Maybe they want a deduction on their taxes. Maybe both.
This was the time of year I would begin my annual fundraising for the Muscular Dystrophy Association. Every year, I would ask my friends, family, and followers to make donations to the MDA version of a fun run — the Muscle Walk. My goal was always to raise enough money to fund 10 minutes of research. And every year, I always surpassed that goal.
But this year, I’m warning the same friends, family, and followers about MDA and urging them to donate their hard-earned money elsewhere.
The good old days.
I was involved with MDA since I was five years old. I have spinal muscular atrophy, one of the muscular dystrophies. MDA was an invaluable resource when I was growing up. They advocated for me, making sure my school was accessible when I entered kindergarten. They paid for a small portion of my wheelchair and leg braces. They connected me with clinical trials.
When I was seven MDA named me the state poster child (now called ambassador, a welcome change) for North Carolina. My mom, a single mother, traveled all over the state with me, raising money for the organization. I can’t count the amount of appearances I made, businesses I visited, civic groups I spoke to. This continued long after my reign as the NC poster child was up. I even missed a few school days so I could appear at different fundraising launches — I vividly remember missing my last day of the 3rd grade because I had an MDA event. But even at that age, I felt it was important. This feeling lasted well into my twenties. I used to joke that I was a professional MDA volunteer, even though I never once was reimbursed or paid for anything. I did it because I loved it with all my heart, and I felt I was making a difference.
MDA poster children from NC, along with Gov. Jim Martin
MDA was my second family. The local clients and volunteers were a tight group. Over thirty years later, I’m still close to many of those people. Sure, I got to meet some celebrities through the organization (and even a Budweiser Clydesdale), but those experiences pale in comparison to meeting what are now my life-long friends.
I know people have spoken out about the Jerry Lewis MDA Telethon. Reading their stories of how their local hosts and offices made it seem like those with MD should be pitied, I completely understand how they’d feel. And yes, there are aspects that I’d consider problematic, mostly from the national level. But for me, going to the local telethon every year was like going to a family reunion. And to the credit of the local hosts (one of which became my mentor and inspired me to become a meteorologist), they didn’t exude pity. They asked interview questions they’d ask any kid or teenager — what music are you into now? What’s your favorite part about camp? What are you majoring in next fall? They showcased our strengths. Though my experience was different than the experience of others, their valid concerns should not be diminished whatsoever.
MDA Telethon with my mom and hosts, circa 1993.
My Muscle Walk 2013 fundraising efforts.
My 2015 Muscle Walk donation total.
The gradual shift.
Things changed as I got older, and some of it was to be expected. I wasn’t the cute kid or teenager anymore — I was a young woman, a college graduate, who couldn’t talk about how much fun camp was since I had aged out. I was no longer one of the faces of MDA and would only get called upon to go to events when the school-age kids were in school. And that was fine with me. I still worked to raise money, more behind the scenes now, and continued networking and meeting people from all walks of life.
But the bigger changes occurred so gradually that I didn’t notice until years later.
Every year I attended a local golf tournament for MDA, sponsored by a large restaurant chain. At every table, they had a chart of how much the items MDA funded cost — $25 for a flu shot, $70 for a minute of research, $800 to send a child to camp. But one year, in the early 2010s, that list wasn’t on the tables anymore. I honestly didn’t think much of it then.
A while later I was trying to look up flu shot information on the MDA site. It was nowhere to be found, so I emailed the local office to find out where to access it. I was told they stopped paying for flu shots a couple of years before.
A few months after that, my wheelchair needed repairs. I was told by the vendor (who had a relationship with MDA) that MDA no longer paid for any repairs. They no longer funded any wheelchair, brace, or assistive device purchase, either.
After that, they stopped paying for MDA clinic visits. If you didn’t have insurance, the cost was on you.
It all came to a head one day in early 2017 when I was asked to visit one of their largest sponsors, Lowes, and thank them for their fundraising efforts. I went my local store and the employees were wonderful and proud of their efforts. The general manager introduced me, and then said, “We raised this money to pay for Despina’s wheelchair.”
I froze.
The employees smiled at me, so happy their hard work provided a tangible reward that helped me. How could I come out and say that they hadn’t actually paid for any of it? That my insurance paid for it? And that I’m one of the lucky ones that doesn’t have to rely on GoFundMe to try to purchase a wheelchair? That MDA misled them completely? When it was my turn to speak, I never addressed my wheelchair and instead I thanked them for raising money and tried to emphasize that it would help with research.
That was the last time I represented MDA.
In November 2017, I received an email from my local MDA office saying I had been nominated for the State Ambassador position. The announcement came with a list of duties I’d have to fulfill, one of which was bringing awareness to their mission. And that’s when it truly hit me. After 30 years, I no longer knew MDA’s mission. I couldn’t support them when they were being dishonest about where donations were going — at this time, money only went toward research grants and camp. How was I supposed to travel the state to talk about what MDA was doing to help individuals “Live Unlimited,” as their motto was at the time, when I couldn’t answer that question myself? I replied, declining the position and explaining why. That email ended up being my farewell to my second family, MDA.
Doubling down.
For nearly three years, I didn’t say anything. Close friends knew what happened, but others were curious as to why I wasn’t doing my annual fundraising anymore. I didn’t want to paint MDA in a negative light because I sincerely hoped things would turn around. I didn’t want people to think they were a bad organization because they weren’t during most of the time I was with them. I wanted this to be a temporary setback. I wanted to give them a chance to redeem themselves. I wanted them to turn things around.
Instead, they chose to make things worse.
I started hearing from other clients and volunteers. How they felt they had become “fundraising machines.” Clients had problems with the doctors at the MDA clinic (that’s an entire story on its own). Camp time got shorter yet more expensive. Some large corporate sponsors eventually moved their fundraising efforts elsewhere.
In late summer 2020, MDA announced they were bringing back the telethon. I knew from the beginning it was a bad idea, especially now that I realized that yes, this was an outdated idea that could only cause more harm to the disabled community than good. But with the news, the questions from my friends started again. Was I going to be on the telethon? Wasn’t I excited it was back? Everyone’s innocent questions made me sick to my stomach.
It was time. I had to let them know.
In September I made a Facebook post sharing that I no longer supported MDA and explained why. I felt a huge weight had lifted off of me, and my friends and family were nothing but supportive.
Then I heard more details about the Kevin Hart MDA Kids Telethon. First of all, though mentioned deep within their press release, most of the public didn’t know that Kevin’s charity, Help From the Hart, would be benefitting from the telethon. The proceeds were being split. While there wasn’t anything wrong about another charity benefitting from the telethon, the fact that it was hidden in the “fine print” felt wrong. And the telethon left out an entire demographic of people with neuromuscular diseases by only focusing on children.
I expressed these concerns on social media the week before the telethon. The day I posted I got a call from a friend, asking if my post was related to the IAFF article that had just come out. I asked what they were talking about, so they sent it to me. My heart dropped.
MDA had been giving millions of dollars in “contributions” to the International Association of Fire Fighters. Payments began in 2008, but between 2015 and 2019 MDA had given the IAFF $5.6 million.
I didn’t believe it. No way would they use donor money to pay what felt like a bribe to the IAFF. The article claimed their information came from government filings, so I went on the US Office of Labor Management Standards site. The first thing that came up was the 2019 LM2 IAFF filing, showing exactly what the article claimed.
Donations that were supposed to go toward neuromuscular disease research instead went to the IAFF.
Follow the money.
I compared notes with others. I tried, again, to give MDA the benefit of the doubt, even though the evidence was damning. But MDA refuses to comment to this day. If they weren’t going to say anything, I was going to do my best to reach as many people as I could to let them know what MDA had done, so I went on social media have been posting nearly every day.
My posts about the findings and probable corruption were viewed on my LinkedIn profile by MDA executives and by MWWPR — a PR firm that helps “in a time of crisis”. The timing was very suspect, making me think MDA hired them to help with their self-inflicted crisis.
On November 12, nearly a month after the article came out, MDA announced they hired a new CEO. There wasn’t any fanfare as there was when they hired their last CEO, Lynn O’Connor Vos. As I went on the MDA site that night, I stumbled across something else. Before the telethon, MDA announced they were “pausing” funding research grants. They also stopped camps this year, blaming COVID-19, and have no plans to restart them.
As of today, November 16, MDA does not fund anything. No equipment. No clinic visits. No flu shots. No camp. And now, no research.
Yet MDA is still touting that they’re making a difference and keep asking for donations.
My entire MDA family is hurt, stunned, and disgusted. MDA WAS a good organization, but they have turned into something unrecognizable. They intentionally cheated their donors — from large corporate sponsors to individual supporters — and aren’t showing a bit of remorse. They are lining the IAFF’s pockets and their own executives’ pockets.
They have abandoned their clients.
We already know they paid millions to the IAFF — millions that was supposed to be used for research. Why?
Why was it more important to pay union officials than provide funding for life-saving research, or even for $25 flu shots that are vital for those with neuromuscular diseases?
They claim the Kevin Hart Telethon raised $10 million. If they’re not even paying for research anymore, where is the money going?
MDA refuses to answer any of these questions. They’re hoping it will all be forgotten soon, that people will hear Muscular Dystrophy Association and not even question their credibility because they’ve been around for so long. But it’s only a matter of time before everyone finds out.
And it’s only a matter of time before their own corruption leads to their downfall.
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