I haven’t written anything on the Muscular Dystrophy Association in a long time. I feel it’s time to formally express my disappointment at some of the latest things that MDA has been doing. Before I get started, MDA is a valid organization in one way. It is doing extensive research into curing the 40+ neuromuscular diseases covered under their organization. That’s about the only good they’re doing. I won’t dispute that fact. What I do dispute is their promises of doing more for all patients with MD.
As a child, I thought MDA could do no wrong. MDA diagnosed my disability (wrongly, I was diagnosed with Werdnig Hoffman (SMA I) when I in fact have Kugelberg-Welander (SMA III)) at age 4. I was the MDA poster child for Northwest Ohio in 1990 and 1991. I was the Ohio State poster child/goodwill ambassador in 1992 and 1993. I was committed to helping raise thousands (if not millions) of dollars for an organization I always thought would have my back.
Things started declining in the early 1990s. In this decade, MDA cut its Camp program from adults. When I was a child, camp had multiple adults attending. For some adults, this was the only vacation they ever got. This is the only time they were able to get out of their home and away from their family (if they lived with parents, able-bodied siblings, spouses, or otherwise). It was their vacation and necessary to their health and well-being. I can’t tell you how much I learned from the adults with various forms of Muscular Dystrophy. If nothing else, they gave me hope of a future. I saw actual adults surviving into adulthood with diseases doctor’s said could possibly kill me or my friends before we finished adolescence. That was one of the most important lessons I learned and without seeing actual adults with MD, I wouldn’t have learned it.
Well, in the 90s, adults were cut from the camp program. MDA said they did it to save money, but it is now apparent this was a first move in shutting adults out of MDA programs. The new rule was, you had to be 21 and under to attend camp. Well, now that rule has been cut, too. This year was the last year those with Muscular Dystrophy between the ages of 18 and 21 were able to attend camp. Now the rule is, you must be under the age of 18 to attend camp (6-17). There have been a plethora of excuses from MDA for why they’ve decided to cut the age again. Saving money was the biggest reason. Another excuse was it cost too much to insure both children and adults, so the adults just don’t get camp.
If that was the only thing that was being taken away from adults, I might turn the other cheek. I do think MDA Camp was vital to the well being of all who attended regardless of age, but it is pretty clear MDA, as a whole, has stopped caring. The organization is about making money; money which pays the CEO of MDA more than the president of the United States makes in one year. He makes over $399,000 per year. Just for reference, that could buy 16, high quality power wheelchairs for those with Muscular Dystrophy or 100 decent manual wheelchairs. This is where your money is going instead of to the patients.
I hear many parents say, MDA has been excellent to me and my children. Yes, they were excellent to me when I was a child, too. Now that I’m adult, MDA has pretty much thrown me to the wolves. Case in point, a few years ago, I tried to go to the MDA in my area. This is not the MDA I grew up with, by the way. This is one in Michigan where I live now. I asked them how long I should schedule my ride for, since I have to travel by public transportation. They told me no more than an hour. So, I told my ride to pick me up within an hour and a half, just because sometimes appointments do run over.
I sat in the office for nearly an hour, waiting to get in. I told the receptionist, this was a time sensitive appointment. They knew I had public transportation coming. Well, nearly an hour into waiting, a small child in a wheelchair enters the waiting area. The mom says something to the receptionist like, “We’re a little early today. I hope that’s alright.” Within five minutes, the child was taken back. I was already 45+ minutes late for my appointment, by this point. I was finally ushered in as my ride was coming back to pick me up. The doctor blamed me for the whole thing and then the patient coordinator of MDA shared private medical information of mine with family members I’m estranged with (who I told MDA could not get information on me), which is, by the way, illegal. I’m over 21, so I wrote to national MDA about the matter to report said illegal activity.
I no longer go to that MDA. In truth, I don’t go to MDA period, anymore. They never return my calls, like when I asked for a referral for a pulmonologist and called them 8-10 different times for said referral. I eventually had to get one from my general practitioner. They rarely get the forms that need to be sent to the people requesting them (like my wheelchair guy had to haggle with them to get diagnosis information to him so he could present it to Medicare for my new wheelchair). The organization just isn’t efficient anymore.
That’s not the worst of it though. MDA believes only children can garner sympathy to make money for their cause. I’m not even going to get into the “garner sympathy” thing, but I’m sure you can guess my thoughts on that. They don’t often use adults in their telethon, unless said adults have ALS or contracted the disease as adults. Once a child diagnosed with MD becomes an adult, I’ve seen MDA turn their back on the child, even if that child and their family have worked tirelessly for the organization for years. I can give you a personal example of this.
Back when I was poster child, I saw adults at the TV station during the telethon. Some even helped out by answering phones or sorting mail. At one point, my entire family worked on the telethon. I was on the telethon. My brother ran errands and helped with the food for the event. My parents worked in the mail room and organized food for workers, the TV hosts, and presenters/guests appearing on television. My grandfather (a former mailman) worked the post office with his retiree friends. My grandmother helped with food. My family isn’t the only family to help. One of my closest friends had an interactive family and he’d been going to the telethon for years.
Well, a year ago, he was told not to come to the telethon anymore. MDA was going in a new direction. National only wanted them to focus on the younger kids. So, this family that had been serving MDA for over 20 years was basically shut out from participation in the telethon, all because the guy is too old for MDA’s standards. When I heard this, this was really the icing on the cake. Sure, MDA will help you if you’re a kid, but let’s forget about it, if you’re an adult.
So, what is MDA’s problem? Why are they so ashamed of their adults with MDA? As a whole, I guess we, as adults, are no longer profitable to the MDA. They don’t really buy much equipment anymore. They won’t buy full wheelchairs, just provide $5000 every five years for help buying one (but some chairs cost upwards of $15,000 these days). They’re more willing to bill insurance than cover the cost of clinic or braces or any of the other things they say they are buying on their yearly telethon. The MDA has gone downhill and people need to know this.
If you’re a parent with a child who has MD, think about your child’s future. One day, they will become an adult with MD. Are you comfortable with the thought of MDA turning their back on your child? I’m not, so I’m willing to step up and let my voice be heard on the matter, every chance I get.