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The Overall Treatment Of The Disabled By The Muscular Dystrophy Association

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The conclusion, of a three part series on the Muscular Dystrophy Association (MDA), Jerry Lewis, and his Labor Day Telethon ends with some final thoughts on the MDA and some personal experiences I have had with them as the caretaker of my longtime boyfriend, Dominick.

If you would like to check out Part One or Part Two of this series, you can go back and read through the links posted on this page.

I want to make it clear that I am not out to make the MDA look like a completely bad organization. There are many people that work for the MDA, who truly want to help. However, many of the people that work at the MDA are similar to the people that work at Burger King. It does not mean they have to be nice or enjoy their job. It does not mean they have to help people. All it really means is they need a job and they have one.

By employing people that are not sensitive, understanding, or interested in the needs of the disabled the MDA looks like an organization that does not care. In the past, it has been suggested by the disabled community locally and in other areas that MDA employees are terse and uncaring. Sadly, many of them treat the disabled as if they are intellectually impaired, though usually this is not the case.

When spending over $12 million annually in paid salaries you would think the MDA could provide sensitivity training or provide employee testing to ensure that employees understood how to treat the disabled and what their most common needs are. Rather than just offering a pay check that the public provides for a job that is sometimes not done well, why not make them earn it while doing some good at the same time?

My Own Personal Thoughts on MDA

I cannot aptly portray other people’s feelings about the MDA. I can only explain what has happened in my own case or rather in Dominick’s. I started dating Dominick in 2002. However, we had been friends since the late 90's. When Dominick and I first met, I was very curious about his disability. I had never known a disabled person personally before. 

Like many individuals ignorant to the needs of the disabled, I asked all the stupid questions such as, can you feel your legs? I tried to observe his actions and reactions to certain things. At first, Dominick had many excuses for why he could not do things. Most of them revolved around his MDA doctors telling him he could not or should not do these things. This made me angry because Dominick is a very determined individual, especially when he has his heart set on his goal.

Despite Dominick living on his own (with Personal Assistants coming in to get him out of bed, dressed, etc.), going to school, balancing two jobs, and other responsibilities, his hope for the future was bleak. I could not fathom how someone with so much potential was so hopeless about their future…until our first visit to the local MDA clinic.

The experiences we have had locally have not been the best. As mentioned, the clinic visits did not go well. Further there were issues with Dominick’s wheelchair. His wheelchair was purchased by a company that did not create it the way they were supposed to in relation to his needs. This caused harm to Dominick’s body that we are still trying to repair. He asked for help and rather than offering any viable solutions, the employee at MDA continued to suggest that MDA pay to have the wheelchair repaired.

For starters, the wheelchair was made for a person 6 foot tall and Dominick is 5’3”. It’s really hard to fix that without at least getting a new seat. Additionally, the engine produced issues with speed and the batteries have never been able to hold a charge. Dominick took the help at first, even though his wheelchair had been fixed multiple times in the past. He had been told by more than one professional who works on wheelchairs that they could not fix his wheelchair. The employee, who’s chief job is listening to the disabled and being the liaison between the administrators/doctors and the disabled insisted that a solution could be found.

She continued to suggest fixing the wheelchair. Dominick continued to tell her that would not be possible especially when he had it fixed only to have it break within a day after the repairs were made (and it got to the point where a lawyer had been involved to get repairs completed after the initial purchase). Eventually, the employee decided to yell at him over the phone so loud that I could hear her across the room, because to her it was obvious that he would not know his needs or his equipment better than someone who saw him once a year for 5 minutes during clinic visits. This is when Dominick decided he would no longer deal with the MDA.

Unfortunately, that was not the last time we dealt with them. Dominick’s grandfather was very concerned that Dominick would not take the MDA’s help. It was brought to Dominick’s family’s attention that Dominick was being selfish and only thinking of himself without taking into account all MDA is trying to do for him. When Dominick asked where this information was coming from he determined that the patient coordinator was providing information, based on her opinion, to Dominick’s estranged mother.

Dominick was 25 years old at this time (and still is) and had mentioned that he was not in contact with his mother. He also requested that she not receive any information about his case or health. Even if he had not requested it, he was an adult living on his own, so the MDA, by law, should not have given out his private medical information to anyone. At this point, the MDA decided it was in their best interest to help Dominick get a used wheelchair and offered him $2,000.

It should be noted that I firmly believe they did this because I sent a letter explaining the situation and my frustration that a national organization would break privacy laws out of spite and blatant discrimination. I suggested that the worker, who lacks bedside manner, be removed.

The MDA never mentioned the problems in their reply. They only said that it had come to their attention that Dominick needed help and they hoped the new wheelchair would do him good. In some ways, it has helped, but unfortunately, the help came too late and there is more damage to repair to his body. And that needs to be done before he's the active, out and about Dominick I first met all those years ago.

Today, Dominick no longer attends the MDA clinic. Instead, he gets referrals for specialists through his primary care physician. Dominick is incredibly vocal about his needs. He is asthmatic and makes sure that it is taken care of regularly. He had spinal fusion surgery so he sees an orthopedist to check on the rods in his back and mold his AFOs (plastic foot braces).

At this point, we are more happy, healthy, and have a goal of one day starting our own organization with the goal of actually helping those in need. Until then, we can only continue to spread the message of hope as we let people know that people with MD or any type of disability can do what they put their minds to, and have a very fulfilling future if they give themselves the chance.

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About Ashtyn

  • This is just wrong. You should be mad at God over Dominick’s condition – not the MDA. Sounds like they’ve spent thousands of dollars trying to help this unfortunate soul, and they’re just getting ingratitude from you in return.

    Perhaps an employee got frustrated at Dominick and hollared at him over the phone. That’s unfortunate, but imagine being them on the other end. They’re dealing with disease and suffering all day long, and they’re human and have frustrations too. For all have sinned and fell short of the glory of God.

    I know I wouldn’t take a job dealing with this stuff all day, so I’m inclined to cut those who would a little slack if they get frustrated sometimes. How about a little appreciation?

  • Al,

    Blaming someone or something for my disability is counter-productive. Why waste my time blaming anyone or anything? I don’t blame MDA for it nor am I mad at them that I am in a wheelchair.

    The three articles were originally one long article that had very little to do with Ashtyn or myself. In splitting thhem up, the editors asked for a little more information on myself for this specific article.

    However, Ashtyn was merely using my experience as an example. It was not done to complain, but merely SHOW what the MDA is doing and how they are acting.

    The true meaning is that MDA says they are using the money (money hardworking people GIVE) for one thing and doing another. That is false advertising and people deserve to know the truth!

    This is just amplified by the fact that they have done nothing to Jerry Lewis who has made bigoted, hateful speech and is suspected of taking money from the organization for his travel expenses.

    If it had been anyone else or any other organization the media would have already had a field day with this, but as it was said in part two of this article…the people in charge have enough clout to try to cover it all up.


  • BTW – I think its kind of narrow-minded to say they are dealing with “disease” and “suffering”.

    I don’t suffer. Even on my worst, most pain-filled days I am proud to be who I am. I am proud to be alive. I am glad to have so many opportunities I’ve made for myself.

    I am happy I’m with my fiancee, child, and feel there are many less fortunate than I am. I have food, shelter, water, heat, air conditioning, clothing, and everything else I need.

    Throughout all your posts you seem to have a very ignorant view of the disabled and whether it is your intention or not it sounds as if you agree with Jerry in his assessment that we ARE half people.

    I have news for you. We’re not. I have friends in wheelchairs who have gone skydiving, graduated college (with degrees in Political Science, Math, Criminal Justice, Law, the list goes on and on), have gone to law school, have been in movies, have become successful artists, etc.

    We adapt to our surroundings but still we find ways around barriers and we are not half.

    Hell, I went to college with a girl who competed in the Olympics for those with disabilities in Athens Greece. She has broken world records for swimming and yet she’s in a chair.

    Amazing what we can do when we aren’t led to believe we should be pitied.


  • speaking the truth

    your ignorant, and I dont blame you for it.. say what you want, but your rants are unvalidated and should not be given a second thought. I had fun reading your blog, it was very entertaining to me. It sounds like you are a very angry person. you might think different, but then why write this blog??? Seems to me like you feel you are owed something by the MDA, when in reality the MDA dosn’t owe you squat. They are out there trying to make the MD world better.

  • Speaking the truth – I didn’t write this blog…My girlfriend Ashtyn did…….She who is able-bodied. She who has nothing to gain from the MDA. She who has seen what they say they will do and how they don’t follow through.

    Many with MD are coming out of the woodwork. They are saying exactly what I am saying. The MDA hasn’t helped them. The MDA hasn’t given them what they promise on their telethon.

    I don’t want shit from MDA, but I do think people need to know about their lies.

    They aren’t just lying to all of us…with MD…

    They are lying to all of the people who donate money for a cause they do not treat.

    Furthermore, if you took a less anonymous name then Speaking the truth your post would have more validity.


    P.S. You can say I’m ignorant and misinformed and don’t know what I am talking about…but I am the one with MD here..I think I know a little bit more about it then the average Joe.

  • speaking the truth

    I am a little more informed than the average joe, in business, in matters with the MDA, and with families with MD. Just because you have MD doesnt mean you understand what goes on at the MDA. This is why I call you and your GF ignorant! Before you knock something down as good as the MDA you better do your research. All you are doing here is complaining, wah wah wah…

  • speaking the truth

    I meant you and your GF!

  • I was a poster child for both state and local. I’ve spent hours and days in the MDA office. I’ve watched them work. I’ve helped in the office.

    I’ve run fundraisers. I’ve had family run fundraisers. My family used to set up food delivery for the telethons which is a HUGE job in itself. I’ve also gone places with the head of the MDA office when my parents couldn’t take me places.

    I think I understand how they run. Heck, I’ve even been in all the rooms of the tv studios during the telethon. I was VERY involved with the MDA and my family was friends with people who worked with MDA. I know what goes on organizationally behind the scenes.

    Where is you proof that you know anything? Like the other anonymous name on the Jerry Lewis post you spout a lot of shit but I see no evidence to back up what you say either -l-.


  • speaking the truth

    Too bad, You have no idea what it takes to run these events. Client familys such as yourself are really pampered at fundraising events, what is the most difficult thing they made you do at an mda event, was it count money, wave to the people, take pictures with the firefighters, run credit cards?? You think you know what happens behind the scenes but as a volunteer, even a goodwill ambassador, you still only know maybe one tenth of what it takes to run a successful event.

    Your food delivery is not with Rick was it??? you say you have run fundraisers, let me guess you were a walk team captian or something of that matter right.

    Lets put it this way, as a past employee, I was much more involved with the MDA than you ever were….

  • Speaking the truth – I attended telethons in Toledo, Columbus, and Cleveland all in one weekend twice when I was state poster child. I had to wake up at 5 am on Monday to drive from Columbus to Cleveland….do a spot there for 1-2 hours and be back in Toledo for the close of the telethon.

    My family completely planned events. I stood out with fill the boot in my town and collected the money, helped count it, turned it in. I stuffed envelopes in the MDA office.

    When we did the food for the telethons we’d call up all the food places. Then I would type up the letters and print them out. I’d label the envelopes and send them to the companies to remind them they were donating things. Then we’d go around and pick up the food. We’d pick up non-perishables like Snyders of Hanover chips and the 7 up machines and transport them to the tv station before the telethon. Then during the telethon, my brother and his best friend would run all over town picking up food from everything from McDonalds to Olive Garden.

    They’d then transport the food to the Green Room (for presenters), the downstairs (for workers), and the room where the tv hosts and MDA heads would meet. This room had special food…Evian Water and things like that.

    Then the food would be put out on the tables with plates and napkins. We’d have to run between places to make sure food was stocked. I would carry stuff on my tray or check on food myself. So I was actively involved.

    Then when the telethon was over, we would clean up the food. MDA didn’t do it. My family did it. We’d then deliver anything extra to the Cherry Street Mission (which is a homeless shelter in Toledo).

    My grandfather who was a postal empoloyee worked for years in the MDA mail room. I’m not sure what they do exactly but I know that we’d deliver the pledges to the room and they’d organize them and I guess stuff enevelopes to mail them out.

    My father helped with the financial stuff, too. He’d count pledges. He was a tax commissioner agent for the State of Ohio and so he was good with money and numbers.

    We would plan events ourselves and I was very close with everyone in the mda office. They always said my family was one of the most active. We would set up the events. I participated in lock ups – calling people to donate money. I’d go door to door. My town had carnivals and superdances and we’d plan everything.

    I devoted my life to MDA. I was very involved and I was not pampered nor would I have ever wanted to be.

    Heck….I would go on the pok-er runs for Harley and if I could stay the whole event and help with cleanup I would.

    I was dedicated and think you have a very low opinion of client families…some who do amazing things for the organization and ask for nothing in return other than the MDA to do as they claim.


  • speaking the truth,

    As a past MDA employee…are you proud to admit that you’ve profited off of someone else’s disability? It sounds that you’re fairly bitter you still aren’t doing so. Perhaps you were fired for your attitude against the disabled clients that you were supposed to be helping.

    I can’t speak from the volunteer standpoint because I have never volunteered other than to offer money, which I no longer do. However, I will say you have a pretty skewed view for an “employee”. Personally, I would think the hardest thing would be to stand there and listen to them say your life is meaningless because you can’t walk and that you will never be anyone of merit unless the watching stranger sends in their money to ensure a cure (one that hasn’t come about in how many years?) can make them a whole person. Of course, that’s just me. I would also think it’s somewhat sad that the people saying that about these people are getting paid to do so. That’s rather disturbing as well.

    By the way, as a person that represents MDA, I appreciate your post. You showed the attitude I was speaking about perfectly. I couldn’t have said anything better myself.

    I don’t know how long you worked for MDA but I do know that they were paying your bills at one point and without Muscular Dystrophy and the families you speak so poorly about, you wouldn’t have been paid at all.

  • speaking the truth

    To be honest, I was offered a better position with more pay, and took it. That is why I am no longer at the MDA… When I worked at the MDA, the Work is hard and the hours are long, but I stayed because there are some amazing kids and people with MD who are supportive and appreciative of our efforts. I think very Highly of MDA Families, I think they are very strong willed and have an amazing thirst for life. Through this job, I have been able to experience what true philanthropy is. What gets to me is when people like you, who believe it or not, owe a lot of thanks to the MDA are so anti-MDA that they wish to hurt its efforts. I think what you guys are doing is extremely selfish and inconsiderate for the others who are relying on MDA to find a cure. In this blog, all you really do is rant. There is no real evidence of the MDA’s wasteful spending. The MDA is in most part an aggressive Cure Driven Organization that has its priorities in the right place. This is why they spend sooooo much on research. Hopefully they will find a cure and this discussion will not be even needed. When I worked there, I was amazed at how much some of my co-workers cared about the cause and devoted endless weekends of free labor to this company. My view of MDA Families are not bad, My view of you is pretty down there though. In your last attempt of an attack on my comments, you still didn’t mention the accounting procedures of the MDA, forms and methods of how they allocate money, banking procedures, grant acceptance procedures. This is why I say you still only know the tip of the iceberg of this organization. I must admit, when you were volunteering with the MDA it seems that you did alot, I pretty sure that there are alot of people who benifited and are greatful from your efforts. I think you are too focused on the Trees and not looking at the Forest in this picture. The goal of the MDA is to find a cure, not to make dominick happy. if that is what you want, do it on your own, and don’t try and bad mouth an well run extremely generous org like the MDA.

  • speaking the truth

    Also, MDA families are given limited tasks for events because they are volunteers. The more behind the scenes tasks are left the Staff, because thats what they are trained to do. When you have something important to an organization, do you leave it up to the Volunteer to make sure this happens? of course not, you rely on the professionally trained employees who are obligated and understand all the rules of the company to facilitate the transactions. I attack your comments because, its so narrow minded in its content. If that came off as me thinking down on MDA Families, that was not my intent. I was very greatful for all of there support and help with the events, there efforts are invaulable to the operations of a succeful fundraiser. But to say that you know everything about the MDA because you volunteered with the MDA alot, is no where close to reality.

  • speaking the truth

    Dominicks GF,

    “I would also think it’s somewhat sad that the people saying that about these people are getting paid to do so. That’s rather disturbing as well.”

    like I said in my last post, I respect and like the MDA families, it is you who I think are doing a dis-service to Dominick and other families with MD, you should be ashamed of yourself.

    “I don’t know how long you worked for MDA but I do know that they were paying your bills at one point and without Muscular Dystrophy and the families you speak so poorly about, you wouldn’t have been paid at all.”

    Wow, you sure told me. I guess the couple of Million dollars that I raised for the MDA does not deserve the right to be able to live and pay my own bills where average rent is about $1100/month for a one bedroom apartment. I have a degree from a top rated university, and my school friends at the time were making roughly 20k more than I was. I stayed as long as I did because at first it wasn’t about the money, I did it for the experience.

    Also, do you even know the average costs to get a drug tested and approved for the public? Its roughly in the 80 Million dollar range. Think about that, If it costs 80 million to get a drug passed to be used on humans, and there are 43 kinds of MD, how much money is it going to take to get this done??? BTW, recently the MDA has come out with a vaccine for pompei disease, so get your facts straight. Also, the fact that you know what MD and MDA is a sure sign that the marketing efforts of the MDA telethon are working.

    I can say confidently that the company employees of the MDA think very highly of the MDA Families. In all the meeting that I went to, people with MD were looked at as intellectual equals who are very capable. If ill comments were made of someone, I would suggest that you look at the base of the comment and see if it was made against the persons personality rather than ones diagnosis. Some people dont get along, that reality. So if someone said something about you, I would really take alook at the comment and make sure where that comment was directed, to your personality or your disability? I would imagine that 9 out 10 times that it was against the person and not the disease.

  • Speaking the Truth – I don’t care about whether MDA makes me happy. It’s a much bigger picture “you” are missing.

    There are MANY families who feel the same way as I do. They feel MDA has let them down. You’ve seen more than one post by MDA families or people with MD themselves on one of the three posts by Ashtyn. They say the same thing.

    MDA won’t return their calls or MDA promised something on the telethon and ended up not coming through. So, are all those people selfish, too?

    I devoted so much time to MDA I had to get special permission from my elementary school to miss that many days to help out at MDA. I am told its the same thing that children who do movies have to get since they miss so much conventional school.

    That you dismiss anything my family did as “not enough” or “not important” says a lot about what the MDA thinks of volunteer efforts.

    You said yourself..all the important jobs are done by professionally trained staff and that MDA wouldn’t trust the volunteers to do these things. These volunteers include Harley guys who work effortlessly to take us for rides at camp and run numerous events to raise thousands of dollars each year.

    I met many wonderful people who were “volunteers” who devoted their time YEAR after YEAR…days, weeks, and months to the cause to plan these events. I know families like this, too and yet they weren’t staff so what did they know right?

    I’m not fighting for ME…I’m fighting for EVERYONE with MD who deserves better treatment from MDA. Without all of us there would be no MDA. Without all of us….there would be no events because the professional staff would have to do everything and the job would be so big that nobody would want to do it. So maybe instead of all of “us” being indebted to MDA…MDA be indebted to US?

    So, we should thank all of those volunteers….like Jim Intagliata…of Toledo who runs a classic car show every year during the telethon and works tirelessly year round to plan the event. Like Mike Murray the former Harley planner for MDA events in the Toledo area. I’m sure if they knew you and those at MDA felt their jobs were not important:

    and I quote “When you have something important to an organization, do you leave it up to the Volunteer to make sure this happens? of course not, you rely on the professionally trained employees who are obligated and understand all the rules of the company to facilitate the transactions.”

    …these men would feel much differently about the MDA and the loving time they devoted. Perhaps you should be indebted to them and not ask them to be indebted to MDA, because I know neither of these men would ask for a dime.


  • speaking the truth

    do you comprehend the what kind of descisions are forced on a PC’s and HCSC’s when working at the MDA??? Do you know what kind of work load is given to a PC or an HCSC at the MDA??? Like I said before, It is Hard work and alot of people can’t cut it in this job, so many quit or get fired. This is a fact of the Job, Its hard work and its not for everybody. I saw many people come and go while I was there, because they couldn’t handle the work load and stress. Many days, I was on the Phone from 9-5pm asking for donations from random companies. In the busy times at the MDA, I have been assigned to three fundraisers at once. These all include Press release, getting almost all items donated, collecting permits for land use, getting city approval on certain types of events, gathering volunteers, securing food and drinks for free, getting raffle prizes and auction items dontated, conducting meetings with executive committee members, doing follow-up phone calls to donors, sponsors, volunteers, press, etc and this is for each event!!! These types of events are done in an office with a maximum staff of 4 fundraisers who all have their individual events. So, take that list of things and times it by 3-4 for an fully staffed office, which is usually not the case, and add 2 admins and a HCSC, health Care Service Coordinator, who is responsible for hundredes of families usually separated by big regions. Thats one person to field calls for hundreds, pretty tough job, I not sure everyone is cut out for the job. With an orgnization this Size, of course you will have some fallout, but by large, the people being served by the MDA are happy and greatful, which is not being portrayed here in this blog or by you selfish people…

  • speaking the truth

    you quote your limited responses of dissagreement with the MDA, but if you would like to go off of feedback from MDA families, the MDA has thousands and thousands of happy families that really appreiciate the MDA for all that they have done for them. They are pretty easy to find, all you have to do is look.

  • Everything you listed for events…we did minus the executive meeting parts. When my town had a carnival my family and another MDA family in my area (we were the only two kids with MD in our town so our town always went full out doing events all summer) set the carnival up, set up all the tables and booths, got everything donated (yes I know the phone call deal…I’ve spent hours on the phone calling for donations and for food donations for MDA before), etc.

    I’ve been to the MDA office more times than you could count. When my family did the food, I practically lived there all summer. When I was very small I brought books along to read as we spent long hours in the office. When I was older I helped out. I stuffed envelopes, ran errands, helped with filing, and did anything I could to help the people in the office (four or five minus volunteers) out.

    The difference is you got paid and we didn’t. I know many who work tirelessly and yet once we “turn our backs” we suddenly become selfish.

    I’ve seen good PCs and bad PCs. The first PC we had was amazing and worked her butt off for MDA in the 80’s. She also quit after MDA started caring less for adults. She quit around the time adults were no longer allowed to go to Camp.

    The PC near where I live now is awful. She only contacts me to ask for donations. She acts like I owe her something even though I have only lived in this area a very short time. She also is very unprofessional and is the one who released MY private medical information to someone she shouldn’t have. That is against the law in case you didn’t know it.

    If you’re so worried about MDA’s bad publicity you would think you wouldn’t be commenting because every comment gives this article more press.

    You assume I want to get rid of MDA. That isn’t the case. I want them to do their job…the job they tell people they do to get money. They are FALSE advertising and that is NOT fair to anyone who donates anything to MDA.

    MDA needs a revamping because more and more people become dissatisfied each day. As a non-profit MDA is supposed to help people. They haven’t helped me since I was a very small child…since I was profitable to them so why should I be indebted to them now?

    I gave them more time and money then they ever gave me. You don’t see me asking for a refund check do you? No..I’m asking them to do their jobs because I used to donate too…every year….any spare cash I had and all my family, friends, etc.

    I think as a donor I have a right to say where my money should go..and so should every other person who donates to MDA.


  • speaking the truth,

    First, I’m more like his wife not his GF. Second, I do have a name. I know you spent a good deal of time profiting off of people with disabilities so you’ve learned to look at the disability and not the name but it is there. Like most individuals I do have my own.

    You claim you raised millions and that’s very wonderful. You sound very proud of yourself. However, you were paid to do that. I am much more impressed by the volunteers you’ve commented negatively about. They do it for nothing…unless you count false hope.

    I think it’s great that MDA exists. I do hope they find a cure. However, statistically speaking there won’t be a cure for a long time. It’s been 50 years and no cure, not even for one disease. To most people that seems questionable. Why isn’t there a cure? I am sure most people would be happy with at least one…it is a start, after all.

    Furthermore, why is it that most trials (since you brought them up) generally only involve young children? Could it be that children are more profitable to them?

    You can say I know about MD because of the telethon but ya know, that’s not true. For one, I didn’t meet Dominick on a telethon. Two, as a child I watched the telethon and you know what I learned from their good marketing? I learned that people in wheelchairs were going to die horrible deaths and we should feel sorry for them because they won’t be normal. As a child and even until I met Dominick I did not realize that MD was anything special. I realized that people in wheelchairs needed money and that’s what I assumed the telethon was for.

    As for you working for the MDA….If I worked for the MDA I would be on here apologizing for your comments because you make them look awful.

    Your friends made more than you but you wanted to help people so you took less money….but money that belonged to people that are horribly disfigured and won’t ever be normal (according to Jerry). That’s sorta sad isn’t it? I mean I wouldn’t admit to working at a homeless shelter because I got free meals…if you know what I mean.

    Finally, You claim we should go to the source. Not all people that work for the MDA are bad. Good. I said that too. However, the source of MDA – the biggest marketer and proud child profiteer, Jerry Lewis, is what people see. He is the one leading people to believe that people in wheelchairs are not whole people.

    If you are offended by what I have to say and you are defensive, which you’ve proven to be…maybe it’s only because you know I am right and don’t want to admit it. After all, your humanitarian efforts don’t look so good when you’re working for crooks.


  • speaking the truth


    did you even read my post??? your comments are all over the place. you adress some items with weak points and completly ignore or make up other parts of my side? you are only looking to pieces of the puzzle, and your arguments are full of fallacies. You think I am a bad person for taking a salary to live while raising money for the MDA. I pretty sure that I am getting the short end of the stick when it comes to currency, because I was raising way over 10X the amount I was recieving. I don’t know where you are from, but where I come from living expense are some of the highest in the country. I am not a rich person yet, so working for free is not an option. At the MDA i was paid to produce results, and If i did not meet expectations they would have fired me. The bottom line is that This is a good business which takes its profits and puts it towards research and services.

    “Furthermore, why is it that most trials (since you brought them up) generally only involve young children? Could it be that children are more profitable to them?”

    The reason why children are used in clinical trials is because they are in the best physical shape for going through tests with new drugs. Also, in many cases the disease is less progressed in kids so the affects of the treatments are more recordable when doing research. It has nothing to do with the marketability of the Kids. For ALS patients we use Adults, because in most cases ALS affects only adults 35 years and up. BTW, these tests are scrutinized by the Gov over and over again to make sure that it is not riskey to the people being tested and this also costs millions upon millions of dollars, even if it gets aproved or not.

    “If you are offended by what I have to say and you are defensive, which you’ve proven to be…maybe it’s only because you know I am right and don’t want to admit it. After all, your humanitarian efforts don’t look so good when you’re working for crooks.”

    Whos the crook in this situation??? who is trying to take money away from research to find a cure for MD??? I just think you are ignorant to the fact what the MDA is about.

    Here is what the MDA is about:
    “The Muscular Dystrophy Association is a voluntary health agency — a dedicated partnership between scientists and concerned citizens aimed at conquering neuromuscular diseases that affect more than a million Americans.

    MDA combats neuromuscular diseases through programs of worldwide research, comprehensive medical and community services, and far-reaching professional and public health education. With national headquarters in Tucson, MDA has more than 200 offices across the country, sponsors 230 hospital-affiliated clinics and supports nearly 400 research projects around the world.”

    A Cure is the primary objective for the MDA, and this is done by funding research projects around the world. it is so advertised everywhere that explains what the MDA is. Also, I like the company of the MDA much more than that of people who are trying to take away money to finding a cure!

  • speaking the truth

    Where are all the other bloggers in this site?? please post your opinions, I would like to see what everyone thinks.

  • speaking the truth,

    Yes I read your post. Maybe the reason you didn’t understand mine was because your post sounded different in your head.

    Regardless, let’s move on shall we?

    I only respond to the things you say that I find senseless, which is a lot of what you say…so I am going to continue with that. I will try to type as slowly as I can…try to keep up eh?

    “At the MDA i was paid to produce results, and If i did not meet expectations they would have fired me.”

    Interesting that you would say that. It warms my heart that you would confirm what I have said all along. The MDA cares not as much about a cure as they do about results. On the streets they call the job you had something else – some people call what you did being a telemarketer, some a sales person – regardless, it’s not an impressive job especially with the reasons you seem to have had for doing it.

    You got paid to produce results, which meant you needed to raise a certain amount of money or you were useless to them and would be removed. That’s kind of how the adults with MD feel.

    Well, except they don’t receive anything except hope for a cure and bad attitudes from paying employees that seem bitter that they have to beg for a cause they supposedly believe in.

    “This is a good business which takes its profits and puts it towards research and services.”

    Again, I appreciate your effort but it wasn’t a very good one. You were paid to produce results for a good business that puts their money towards research..and now you add services.

    Let’s ponder something shall we? – According to the MDA website the allotted amount of money per person with MD changes each year due to funding growths and decreases. Why doesn’t the annual salaries do the same? This, to me, means that the paychecks come first. That hardly makes it good business or a caring organization.

    Thank you for pointing out that adults with ALS do receive trials. As you also pointed out ALS is generally a primarily adult disease. Who else, in this case, would researchers test the drugs out on, elephants? – Probably not.

    Thank you for linking to the MDA, I did much of my research for these articles, using their website. I did not link to it as I felt it was not a quality resource to these articles. If you had read all the way through my articles you would see that I have no specific problem with money being raised for a cure. I do have a problem with false advertisement.

    According to Jerry Lewis he buys everyone wheelchairs. Hell, he doesn’t even mention the MDA when he says it…like you, he takes a personal stance and claims all the hard work for himself….there truly should be an I in Team, where you MDAers are concerned. It’s all about your individual work validating your caring personality.

    The MDA page claims services and purchases. They show pictures of accessible vans. I bet they don’t buy them though. In fact, I know they don’t. Much like they generally do not buy wheelchairs, clinic visits, leg braces, physical therapy equipment, commodes, home renovations, or Hoyer lifts. BUT they will tell you they do.

    Jerry will tell you that he will personally wipe a person’s ass if it makes them money. But he won’t…at least not without ridiculing them and calling them low-life cripples.

    My point, since you so obviously missed it…is that as a hard working consumer I do not feel my money needs to go to you or any other person working at a CHARITY. If you want a handout…go get welfare…it worked for plenty of other people and you don’t here them complaining about the amount of work they did…because much like you there is no hard work to be proven or noticed.

    The fact that MDA claims to do one thing and actually does another says all I need to say. Unfortunately, I do have a rather busy life outside of your irrational comments and need to tend to that.

    Feel free to keep making this post more popular but you will have to validate your self-worth alone. I understand that you need to keep stroking your ego but the facts have spoken for themselves…just like they do when every ungrateful MDA dropout explains their story.

    If I were the only able-bodied person that loved someone with this disease that was saying something you could say it was me. However, if you check the Internet you’d see I wasn’t the only one. There are websites and Independent movies on the same subject I’ve brought up. There are also pieces in newspapers all over the country from the Chicago Tribune on down the line.

    I think it’s wonderful that you need to defend your position but you’re not holding the boot and the phone isn’t at your ear to try and sucker someone’s money out of their pocket.

    If a cure happens that’s great…I’m looking to protect the living…after all, most forms of MD are not a true death sentence…though being confined to the preverbial back room sure makes them look that way.

    Good luck on your quest to help bring out the truths I’ve told….and God Bless!

  • speaking the truth

    wow, your a wack job… enough said….

  • speaking the truth


    Question, how is your NPO doing by the way? How many people do you have on board and what type of operation do you run? What type of budget do you wield, and how are you helping out your constituents? Since you have such a great org, I assuming that you must have at least 85-95% of all proceeds going to your clients or families. I’m giving you 5% for general expenses such as the maintence of the website fees. What is your expansion plan, do you plan to do all the money allocation to the people who ask for your help? Also, how do you deal with fraud?? Do you have a legal team assembled, all for free of course, to defend you when people such as yourself bring up false accsuations against your NPO? If you are so much better than the MDA, How would you change it?? But remember when you answer this questions, you must explain how the company will change with your changes. Example: lowering Salary of CEO: this will lower the quality of the CEO, because the position will become less desireable to other highly qualified CEO’s seeking this position. once you can bring about arguments with valid solutions, maybe more people will take your credibility more seriously.

    My suggestions to you are read more books on how to run NPO’s and general Business principles. Because it is obvious that you know squat about it.

  • Speaking the truth – We have just started working on a non-profit. There is already one event in the works, and more to come. I already have the support of more than one family/patient with MD.

    Our non-profit is nothing like the MDA. I don’t even see the two comparable. I will not in any way be looking for a cure. There are plenty of organizations looking for a cure for each disease (such as Families of SMA, Duchenne Organizations, etc.) besides the MDA.

    My goal is to see that those who are living with MD now continue to lead the productive lives so many of us are leading.

    As long as I run a non-profit organization not one cent of the money actually earned from events, fundraising and donations will go to a CEO paycheck. If I have to run the non-profit myself as long as I live it will remain just that…NON-PROFIT. Hence I do not profit off of the organization.

    As I’m sure you know a lot of preparation goes into planning events, advertising/press releases, developing a webpage, handling all of the legal aspects of running a non-profit, etc.

    You can be down on our organization without even knowing about it, but that’s worse than us being down on the MDA. We have experience with the MDA first hand. You know nothing of our organization other than the fact that we have one.

    However, my goal is to help people and nothing you or anyone else can say will stop me from achieving that goal.


  • In response to the questions I missed…

    1. 100% of the profits will go to serving those with MD. If we do ever end up with paid employees we can apply for grants to pay those employees rather than dipping in our “helping people honey pot”.

    2. We actually have the website covered. All space and maintenance has been donated free of charge for as long as our organization is up (and we aren’t going anywhere). Additionally, the website design has been completed. Our host is one of the top paying web servers so we don’t have to worry about a free “with banners” type setting.

    In my day job I work with Linux web servers so I know quite a bit about how all of that works.

    3. Ashtyn studied Criminal Justice in college so I am sure we won’t have the same problems that MDA has wih supposed “false accusations” since she knows what it takes to stay within the law.

    MDA’s response is to attack the physical or “mental” well being. Jerry’s response is “they’re all a bunch of cripples in wheelchairs, half-people, who can’t be believed because of it”.

    I find that when you answer “false claims” with intelligent responses you avoid the need for lawyers. Unlike MDA, I have nothing to hide. When we start making money, we’ll be keeping meticulous records so that if any questions arise…we can present our books. I have no reason not to be 100% honest about how my non-profit is run.

    Also, I have some connections through the volunteer circuit that can help with pro-bono lawyers if the need arises.

    Hope this answers your questions 🙂


  • speaking the truth

    Its been fun, But I really don’t see the point in writing here anymore. Your responses are unrealistic and idealistic in nature. Good luck on your cause, But I highly doubt that you will reach an effective size to help all the people you were talking about. Do you have an advisory board yet? Do you know what an Advisory board is?? you don’t have to answer that, because i am wont be reading here anymore.

    Well, this is my last post, I hope the people will have fun reading this long standing debate as I did. In my opinion I am the victor, But I am sure Dominick and Ashtyn will beg to differ.

    Speaking the Truth…..

  • joshua 26

    As one who currently suffers from DMD, I understand your frustrations. I used to appear on the local telethone in Alabama every year, but discovered that there was not much they really did to help us. Medicaid has done more for me than MDA. I currently live in Texas and I have not seen a representitive in three years. I have also decided that instead of becoming bitter, I would become better by trusting God to do right with everything he has allowed to come into my life. I am currently in Bible college and working with kids at church. There is no reason that anyone cannot do anything they desire to do. Dominick, what is your relationship with Jesus? Here is part of my life story http://www.totallyteenministries.org click on my life.