An open letter to the Muscular Dystrophy Association

Dear Muscular Dystrophy Association,

This weekend will mark one year since your payments to the International Association of Fire Fighters were exposed. You’ve had a year to tell us why you gave the IAFF over $6 million while you cut funding for vital programs. That’s a year of ignoring pleas from clients and volunteers, former and current, who asked you for an explanation. That’s a year of donors questioning where their money was really going and discontinuing their contributions altogether. That’s a year of corporate sponsors dropping their support and partnerships with you. Yet you stay mum.

Your silence speaks volumes.

While you gave these millions of dollars in contributions to the IAFF — millions of dollars that wasn’t even your money, but money given by donors and sponsors to help those with neuromuscular diseases — you quietly cut programs you were known for. You no longer fund wheelchairs, braces, assistive devices, or flu shots. Your so-called MDA Care Clinics are just that in name alone — MDA does not fund them or support them in any way, other than refer new patients to them. You only slap your name onto existing medical practices. You don’t even fund your clients’ visits to the clinic. If they don’t have insurance, the only way of helping them is by offering assistance with finding other organizations that may be able to help them.

Even before the news first broke last year you did something else unthinkable — you stopped funding research for months. You kept sending emails about the Kevin Hart Telethon, camp, and fundraising, yet you weren’t funding anything.

Through the COVID-19 crisis, when your clients needed you the most, you abandoned them. You could have saved face — and, more importantly, saved LIVES — by reaching out to your clients then. By doing the bare minimum of sending them masks or helping them access vaccines. Yet you didn’t. But you did find time and money to create these misleading ads.

I‘m sincerely asking — what did you do to help your clients during the COVID-19 crisis?

But you won’t answer that. You won’t answer anything. Instead, you hire a new CEO and board members and crisis management companies and pretend none of this ever happened. You hope people will still assume you help those with neuromuscular diseases since you actually used to. You hope media won’t pick up the story about the IAFF payments. You won’t tell us why, if there were a legitimate reason for these payments, they didn’t appear on your 990 tax forms. Or why these payments went to the IAFF when only about 30% of the firefighters who actually go out to help those with neuromuscular diseases by filling the boot are involved with the IAFF.

You won’t answer why you were raising money for camp this year, knowing well in advance in-person camp wasn’t going to happen. Virtual camp uses existing platforms — you do not pay to use one or create one. You won’t even fund the assistive technology many of your campers need in order to attend virtual camp.

You don’t want the public to know you took out over $10 million in PPP loans in 2020 and 2021, yet furloughed employees. Your executives did well though, with your former CEO making over $850,000 last year — which included a $350,000 severance for a job horribly done. You also don’t want everyone to know that you spent more than twice as much on compensating your executives than you did on research last year.

Those in high-ranking positions were doing so well they happily posted photos on social media, showing what a wonderful time they were having traveling the world with their families, while MDA families were scared and looking for support during a pandemic.

You, frankly, have become useless.

I was a client and volunteer for you for over 30 years, and dare I say that’s longer than any current executive or employee. I was there when your organization was actually doing all the things you claimed to do and actually making a difference in people’s lives. I raised thousands of dollars for you every year. I represented you. Now, when someone posts an old photo of me from an MDA event, I feel sick to my stomach. I have made it clear to everyone I know — you are no longer the organization I touted, and you’re not to be trusted.

And Charity Navigator agrees. They say you can “give with confidence” to three and four-star rated charities. You’ve earned one star.

This score doesn’t even take your 2020 taxes into account yet (as of 10/14/21), which doesn’t bode well.

You are lost, corrupt, and grasping at any straws to save face and survive.

So what should you do to turn things around?

-Start by telling us why you gave the IAFF over $6 million. And please don’t insult our intelligence by saying it takes money to raise money. Your tax forms are there. Their tax forms are there. Tell us the truth.

-Be honest about what you provide, if anything. As of today, you only fund some research and virtual camp (which costs next to nothing). Your tax forms indicate the majority of donations, by far, are going to salaries, benefits, and compensation.

-Stop playing with semantics. You say you provide “care” and “support” for kids and adults with neuromuscular diseases. How? Does the care include paying for doctor visits? Supplies? In-home care? Equipment? Equipment repairs? Support groups?

-If you want to just be a referral nonprofit, then say so. But start fresh. Rebrand. Possibly rename. No more implying you do anything else and no more lying through omission.

-Don’t bring back the telethon ever again. It was hurtful and a blatant slap in the face to everyone in the disabled community who urged you not to last year. Not to mention you haven’t been upfront as to how much it brought in for MDA and how much was given to Kevin Hart’s charity.

-Listen to those with neuromuscular diseases. Stop speaking for us if you don’t listen to us. Get disabled individuals with neuromuscular diseases on your board, not just their family members. And I don’t mean your little advisory board that lasted a year — your executive board.

-Get your finances in order. Anyone looking at your financials can see you’re in trouble. That $6 million you gave to the IAFF would have helped right about now, especially when it’s been reported that you “borrowed” $6 million from donor-restricted funds and owed $700,000 to outside parties. From the looks of your latest tax filings, you now owe over $23 million (How did this even happen in one year? It would be comically impressive if it weren’t so utterly depressing). Lower your CEO’s and executives’ salaries. Maybe stop paying that crisis management company if you haven’t already. They haven’t really done anything to manage your crisis.

Maybe, just maybe, these actions would be enough for the public and your corporate donors to trust you again. But for most of us, the trust is completely gone.

I’m aware MDA executives read my posts, and I know some have expressed their frustration with me. You’re hoping I’ll get bored and will stop exposing your lies and corruption. You’re hoping I’ll give up.

Maybe you’ve forgotten the motto you instilled in your clients and their families in the past, but I haven’t. It was “Never give up.”

And I don’t plan to.