MDA’s Latest Fundraising Plea is Less than Honest
It’s November, which means Giving Tuesday will be here soon. Many nonprofits ramp up their fundraising efforts this day and the 5–6 weeks until the end of the year. They remind you that this is the giving season, that you should be thankful for what to have and give to others (and that your gift is tax-deductible — send it in before the end of the year!)
The Muscular Dystrophy Association is no exception.
Even with their countless scandals, most notably cutting services to clients as they contributed millions of dollars to the International Association of Fire Fighters, MDA is still out there, asking for money to provide “hope” because they “change lives.”
Know what would change lives and give hope to those with neuromuscular diseases?
-Helping pay for equipment like wheelchairs, braces, and other mobility devices, that provide those with neuromuscular diseases independence
-Giving clients access to their loan closet, where they could acquire gently-used items like hospital beds, wheelchairs, etc.
-Providing support through support groups, or even having someone local to answer their questions and guide them to the right resources
-Funding visits to neuromuscular disease experts
-Paying for flu shots, which are truly life-saving for many with neuromuscular diseases
-Making their clients feel like they matter
These are things MDA actually did in the past. But they haven’t done any of them in years.
The following is what they sent out to many donors recently. Let’s dissect it a bit.
There’s a lot to be said about this, but let’s just focus on their bullet points.
The first bullet point is interesting for a couple of reasons. First of all, it says “MDA continues to fund research with 153 active grants in 2021.”
Interesting, since this was sent in November 2022.
According to MDA’s 990, they funded over $13 million in grants in 2021. It’s not a huge number, but let’s give them the benefit of the doubt due to COVID. But just two lines below, we see that they spent over $20 million on salaries, other compensation, and benefits for their 248 employees.
Once again, they gave more money to their executives and employees than they did to research grants.
Second, MDA funding wasn’t the only funding that led to treatments. Other organizations also fund research — the same research. For example, this is information about Vamorolone, a treatment for Duchenne Muscular Dystrophy, that was just submitted to the FDA:
MDA didn’t fund this alone. They HELPED with funding, as did several other organizations, but they want to make you think they did it all. And let’s get another thing straight — there are no MDA doctors. MDA does not employ them to do anything, let alone conduct research. These are doctors who are already researching different forms of neuromuscular diseases and MDA awards a select few small grants.
Which brings us to the second bullet point — there’s really no such thing as an MDA Care Center. There are neurological/neuromuscular clinics across the country that that have allowed MDA to pay them so they can be called MDA Care Centers. That’s it. MDA has no control over these clinics, and the clinics see people with other issues like epilepsy, cerebral palsy, etc., not just one of the muscular dystrophies. MDA no longer pays for MDA Care Center visits for their clients, either. In fact, they no longer have employees at the care centers to represent MDA. That MDA-client relationship is completely gone. So I have to wonder how it is they’re providing “coordinated, patient-centric care in one location” when they have absolutely no part of it anymore.
Lastly, camp. My last article was about MDA’s camps, or lack thereof. Months later and I am still unable to find any proof that in-person camps occurred this year. I was recently able to confirm another camp was cancelled. If camps took place, why didn’t MDA post any photos? Why didn’t local newspapers or TV stations show any footage? How many in-person camps actually took place? And when they say “we can continue to provide an inclusive summer camp experience at no cost to families” that’s not true. Virtual camp — if you consider it an inclusive summer camp experience — requires a camper to have access to the internet, and many campers require assistive technology. MDA doesn’t fund any of this, leaving many campers, especially those in rural areas, unable to participate.
After my local summer camp was cancelled, a group of former volunteers put together their own camp. This is what one of the organizers, a longtime MDA volunteer, posted about it.
Before donating to MDA this Giving Tuesday, or any time at all, please think about the information in those bullet points. They may double your contribution, but the money isn’t helping those who need it.
And please, please think of the volunteers and who took it upon themselves to hold camp when MDA wouldn’t. They are the ones bringing hope and support to those with neuromuscular diseases, not MDA.
