Hello,
I just met with three members of the MDA, one of whom heard me mention at a Darius Goes West screening that we hosted that I was not happy with how aggressively they funded research.

They wanted to talk with me about why I take Aidan to Cincinnati instead of going to Children's hospital in seattle, (where the neurologist told another family that prednisone doesn't stunt growth like deflazacort!). They also wanted to talk about what they could do to earn my support.

They brought what they thought were "supportive documents". They included a list of all projects funded by the MDA for the past three years. It included a $34,000 grant to Dr. Hoffman for non-hormonal steroids. They also brought an MDA press release about Dr. Hoffman's recent results in the puppies, where they "announce" that the "MDA-supported investigators" had a recent breakthrough in exon skipping.

I left the meeting in tears. I feel that the language of that press release is very misleading in that the MDA is basically trying to get people to think that they are funding Dr. Hoffman's exon skipping efforts, when they haven't spent a dime on exon skipping. They also recently just opened a new office in my home town, like the one in seattle wasn't big enough for them, and I'm sure they spend at least a couple of hundred thousand per year on it. And yet Dr. Hoffman is only worth 34K to them? I really hate to think about what could have been accomplished by now if the MDA was serious about actually curing this disease rather than loaning my son some crutches.

I'm sorry about the tirade - I just got so frustrated with them asking me, "How can we serve you better?", and I kept saying - take some of that 162 million you have in the bank and spend a couple million on research that actually might hit the clinic sometime soon rather than spending a pittance on a bunch of projects so that they can take credit for their success. Only a handful of grants they handed out were over $125,000.

At this rate, they'll cure duchenne in 50 years. At least they'll all have jobs until then.

I'm really sorry if I offended anyone - just been carrying this around since yesterday.

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I forgot to mention that I feel that the MDA should promote this group for help from other parents (if they really care), as we should all be in this together, to share information, ideas, raise money, help one another, etc. It is about the children and doing all that you can do and they should "suggest" to all that PPMD is a great source. If they did, I'd think that this group would be a lot larger than they are. Does anyone know if they suggest that folks should go to this site for support? Michelle
Hi Michelle,
I asked them why they don't tell parents about PPMD in our meeting. One of them told me that "there's nothing PPMD does that we don't do", at which point I laughed. I can tell you the reason why they don't tell people about PPMD is that they want to keep people in their fundraising fold.

I said that I would like to see from them their grants as a percentage of the total cost of each researcher's lab. Basically, I wanted them to admit that they're probably funding less than 5% of the total costs of running each of these labs per year.

And I definitely do look to them to cure Duchenne. Who is better positioned and funded? All of us parents asking our neighbors for spare change and running races have spend more on research than the MDA, and they have IMMENSE corporate support.

I think the thing that infuriates me more than anything is that they are out there asking for money in MY SON'S NAME, and then spend it on themselves.

And the deception of that press release was unbelievable, I felt.
OK - here we go:

Valeria Cwik, MD
Senior Vice President, Research and Medical Director
vcwik@mdausa.org

I think we should all contact her and ask:
1. What she feels is the most likely therapy to hit the clinic first, at this point?
2. How much money, in her estimation, does it take to bring a new drug to the market?
3. Why does the MDA spend such a fraction of that total cost?
4. What is their overall strategy in grant allocation?
5. Why does the MDA feel the need to mislead the public about what research it is supporting and the extent of the support they do give?

I'll let you know what I hear back/
Mindy, I too was upset with the press coverage. The Foundation to Eradicate Duchenne, Inc ( an organization we fundraise for) funded $500,000 towards that Begal pup project. Why does the MDA take credit for projects funded by other organizations? Why does politics even have to enter into the World of Duchenne? Leave us alone, we are tormented enough!

Mindy, I'm joining in on your tirade, too. When our son was diagnosed with Duchenne almost 5 years ago, we were given names at the MDA clinic of at least 4 parents who support ( translation: fundraise) the MDA organization. I found out on my own, a few months later, that a set of parents who live 5 minutes away from my home have a Duchenne child. Yet, I was never given their names since they don't fundraise for the MDA. Sneeky buisness, gotta tell ya!

I later confronted the neurologist and was told he didn't give me their name becasue the mom was depressed. Yeah, well, hello?
Since they cover more diseases than just Duchenne, though they're more than happy to trot out our boys to raise money, I could understand if they weren't willing to donate they're entire endowment to move the date of real treatments up a couple of years, like they probably could for at least us. If they did that, then those equally horrible diseases they also claim to support would have reason to complain. However, what's unforgiveable can be seen by anybody who can add, subtract or multiply here: http://www.guidestar.org You will need to register to get access to their IRS filings, but in 2007, they raised $137,000,000 in donations from the public and had another $4,000,000 in investment income. Out of that, they spent $66,000,000 on "patient services," $37,000,000 on research, $22,000,000 on fundraising, and $12,000,000 on management. In other words, even if you assume that "patient services" does not include anything for administrative overhead, it's apparent that they spend about as much money on themselves as they do searching for a cure on the diseases they recognize. Let's just say that I am not a fan. I can't even get them to cover the fees for seeing the uncovered portion of Alexander's biennial exams at the University of Utah. They did lend us a nice scooter, and I do plan on taking advantage of their contribution to the upgraded scooter Alex will need this year as he slips toward his end state.
Mindy said:
Hi Michelle,
I asked them why they don't tell parents about PPMD in our meeting. One of them told me that "there's nothing PPMD does that we don't do", at which point I laughed. I can tell you the reason why they don't tell people about PPMD is that they want to keep people in their fundraising fold.

I said that I would like to see from them their grants as a percentage of the total cost of each researcher's lab. Basically, I wanted them to admit that they're probably funding less than 5% of the total costs of running each of these labs per year.

And I definitely do look to them to cure Duchenne. Who is better positioned and funded? All of us parents asking our neighbors for spare change and running races have spend more on research than the MDA, and they have IMMENSE corporate support.

I think the thing that infuriates me more than anything is that they are out there asking for money in MY SON'S NAME, and then spend it on themselves.

And the deception of that press release was unbelievable, I felt.

Mindy - What's interesting is that there are some other DMD families that were approached by DMD to support Chamberlain's research. It's like the fund raising is big business and there is a competition of what organization can recruit the top fund raising people.....And, as you point out, the funds are not reaching the DMD research...just programs like the summer camp and $3k every three years and loaner equipment. Certainly, if there was no DMD, where would that leave the MDA? I thought I had read that the MDA president pulls a salary down of close to $1million and who knows about bonuses....Char Burke
Wait - so they spend 37 million on research in 2007? Wasn't that the same year they sent out those glossy foldouts about how much they're contributing to Duchenne research - 6 million was the number they were bragging about?

So where did the other 31 million go? ALS?
Hey Mindy,

I had to reply to this. The second year that ppmd was in existance the nurse from Seattle Childrens gave me the conference flyer and said that I might be interested in this. I was and I started attending yearly. I think they need to work on the clinic model and they have conceeded to my requests that weren't in their "game" plan. I think they are feeling behind and perhaps that is why they approached you. With Chamberlain being down the street I expect them to raise their game. I know the Director of the clinic retired last year, so maybe they are trying, but we don't always have time for them to get their clinic up to speed. I make suggestions each time I am in there. The U of W has a solid pulmonary team so check them out when Aiden is needing assistance.

I think it is interesting that many here have been networked with other MDA families. For years I asked for the names of other families so that I could connect with other families dealing with dmd and they refused citing confidentiality. It took the PPMD conference for me to connect with other families. That really bugged me.

I also get bugged by MDAs ego (citing what they have done) when other organizations have started the ball rolling. There is this competition, but when it comes to dmd the competition should be with the disease and not research funding groups. Ok, thanks for letting me vent and share a little.

Karen
Mindy said:
Hi Michelle,
I asked them why they don't tell parents about PPMD in our meeting. One of them told me that "there's nothing PPMD does that we don't do", at which point I laughed. I can tell you the reason why they don't tell people about PPMD is that they want to keep people in their fundraising fold.

I said that I would like to see from them their grants as a percentage of the total cost of each researcher's lab. Basically, I wanted them to admit that they're probably funding less than 5% of the total costs of running each of these labs per year.

And I definitely do look to them to cure Duchenne. Who is better positioned and funded? All of us parents asking our neighbors for spare change and running races have spend more on research than the MDA, and they have IMMENSE corporate support.

I think the thing that infuriates me more than anything is that they are out there asking for money in MY SON'S NAME, and then spend it on themselves.

And the deception of that press release was unbelievable, I felt.
I already aproached the man at the clinic and I told him about Dr Chamberlain and he responded with this

Hi Dana,

I did some research and it doesn't look like we fund Dr. Chamberlain at the
moment. He is always able to apply for a grant from MDA though. We do fund
research on Utrophin therapy. Have you had a chance to read that Quest
article I pointed out to you?

Let me know if I can be of further assistance in the future.

I don't want to give his name he just works for them. I don't think he realizes how corrupt they are. That is they way I feel. Why does he have to go to them?? Why aren't they going to HIM??? He is making major break throughs.
I am a personal friend of Dana Edwards, and her whole family, including the much loved Tanner. Never knew much about DMD, in fact nothing, until Tanner was diagnosed a little over a year ago. I am definitely an outsider looking in, as I have no experience with this disease, having had three healthy boys. But daily I see the fear and frustration in my friends' eyes regarding Tanner. In fact, Tanner is the only one who isn't afraid!! The more I read the comments of parents who are experiencing the same frustration and fear as the Edwards, the more I want to rip out the hearts of the MDA organization. MDA is a business, just like the government is a business. From what I have seen, they are using your children, the same way the big banks and Wall Street used the working man who stashes his $10,000 (if that) a year away for retirement, only to find that his money has been poorly invested by those who claimed they knew better. Dr. Chamberlain is a wonderful physician who is truly in tune with DMD. If you're going to do research, do it for Dr. Chamberlain, not for an organization who claims to give it all to research.
Also, you are quite right about the "no Duchenne, no job" theory. How much does MDA really want Duchenne cured? Know why? Your kids are in the minority. The majority of the population does not have DMD, nor do they know what it is or how it progresses. If you want to fundraise, do it for Dr. Chamberlain specifically and hand your donation to Dr. Chamberlain specifically. Don't depend on ANY organization to do it for you.

You parents have been put on quite a winding road with this. You are all really special or you wouldn't have gotten these boys. God doesn't punish. He gave these boys to you because you can handle the road ahead. God bless all of you.
Hi Karen,
I've heard that the UW has much better care for the boys than Children's - that basically, the whole care system is set up to focus on pallative measures, so once we're at that point, I'm sure we'll be taken care of.

The thing is - the paradigm of duchenne treatment is changing. It's no longer simply pallative, but strategic - how do we treat these boys now with an eye toward any treatment that might be available in the future so that they can take advantage of it. And if Children's isn't looking in that direction, but they're taking MDA money to be an MDA clinic, then they are doing a disservice to every patient that might be able to benefit from future treatments that they serve.

The people I met with actually asked me to meet with Dr. Hays to explain to him what Cincinnati does so that he could be a better doctor. They said that he really wants to be better, and isn't that important, that he wants to change? I said, OK great, but when I want to get better at something, I get off my a**, and figure out how to get better at it. I don't sit around and say, "Gee, I really want to be better at this. I wish someone would come and tell me exactly what I can do to get better. And until then, I guess I'll just sit around and wait..." I mean, seriously, I'm supposed to sit down with him and tell him how to be a better DMD doctor? What I want is someone like Dr. Wong, who actually cares enough to have the intrinsic motivation to be the best doctor she can be to these boys.

More venting. Sorry...
This is another maddening thing. If the MDA is funding these clinics, how come they don't seem to make any effort to motivate the physicians to stay on top of current treatment regimens and diagnosis standards?

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