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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With my experience with my local MDA it does not seem like thay are very in touch with the DMD research and our issues and the best treatment for our sons. Some have never even heard of CCHMC and Dr. Wong and certainly try to keep the care local. I get the feeling when I go to my local MDA every once and a while to have my son seen that they can't understand why I am going all the way to Cinc. for his care. Seems like PPMD and the various DMD parent organizations out there are doing more to push the research for DMD than the MDA. I'm not trying to totally bash the MDA, because I know they do a lot of good and raise a lot of money but still I feel at odds with them at times and not on the same page. It does seem like they stand up and try to take all the credit as well when something good comes out. The MD Care Act comes to mind.. Maybe I'm wrong but that has been my impression so far.
From what I can tell, there are good MDA offices and bad MDA offices and clinics around the country. I don't look to the MDA to find a cure for DMD, I look to them to help us with what we need in our daily lives (equiptment, camp, etc) and I do like our local clinic. If we still lived in MI, we would be in the same boat as Karen and going to CCHMC.
My husband and I have decided if we don't like our local MDA office (we like the clinic) we are now trying to become involved and make the change and become the change we want to see. We are the new generation of DMD parents and we are going to open some eyes and attitudes if we can.
I couldn't agree with you more. I also had a member of the MDA confront me at the clinic also telling that they are on everything helping everyone. I had him take my e-mail and I asked him about Dr Chamberlain out at the University of Washington who is scrammbling for funds. Who is working in Gene theropy and Utrophin which will help all of us. They guy was so nice but when he wrote me they aren't helping him either. I feel the same way about there reserve they have. Take that money and give almost all or all of it to Duchennes. This is why I get so mad at the telethon and all the store that are fundraising we don't see this money. I think the MDA should be investigated. I really do, this disease has been around for 120yrs. This is a very bad subject for me but I feel the same way you do. I am also sorry if I offended anyone but my sons life is on the line. I want a cure NOW!!
When I first found out about Nicolas, I called MDA. They got me in touch with local families who I spoke to and those parents told me about PPMD. Our chapter has a very good support group, but I haven't seen any doctors through MDA. When I asked them exactly what they do because I was still learning the ropes of being a DMD mom, they just looked at me like I was stupid. I also emailed an MDA office in my area, and they never replied to let me know what they can do for me. To this day, I still don't have the answer. I was not informed of their clinics, and still have no idea where they're at in my area. I'm there to help them raise funds and awareness, but I agree that they're not putting their money where their mouth is. They're just not doing enough for research. I am glad for the support groups (when I get a chance to go), and for their assistance in medical supplies. And when my son finally gets a chance to go to camp next year, I'll be thankful that they can give him an enjoyable time (hopefully!!). But they are totally lacking in research, and that's just too disappointing to stand and take!
No offense taken here. I too believe MDA is sitting on a bucket load of dough that should be released asap. Right now is an extremely critical time for researchers and bio-pharms and that translates down to better treatments and possibly a cure for our sons. What are they waiting for? I thought thats why they (MDA) did all that fundraising...to help Jerry's Kids! Although I haven't been approached by them like you have I have had some extreme comments...like when the local MDA doc said "only the minority families that come to me actually do what I say"...huh? We were there interviewing him as a potential doc for our son and he failed the "do you know the latest research" question. Then there was the comment made by my local MDA rep, and I quote "Pat Furlong just doesn't have the fundraising ability we do". That was completely unnecessary.

I checked into filing a complaint or doing something about them but was told they have more money than god, don't bother. Couldn't we get up a petition or something? I was recently told by my local rep that MDA is undergoing some sort of "transformation" but I haven't seen any changes yet, have you?
I'm really surprised that the MDA would question the decision to go to Cincy. The quality of care with Dr. Wong is NO comparison to that at Seattle Children's. Seattle didn't want to check my son's heart, they didn't recommed even 1 supplement. I had done some research while I was going througth the diagnosis wait and I had lists of supplement questions and I specifically asked about exon skipping 51 and the nurse told me she hadn't even heard of exon skipping. I talked to the Neurologist and he said he would have to do some research and then came back and told me that exon skipping was only for duplications not deletions, I have the paperwork to prove it. Then the genetic counselor told me she did know about exon skipping and had the diagram, etc about it. How could a genetic counselor at Seattle know about it, but not the nurse's or doctor's, that's a discrace. Even Canada which is only 3 hours from Seattle is very similar to Cincy and Dr. Wong. Then do all the same tests, they check their hearts. Seattle told me that generally boys with DMD don't show any cardiac issues until around 10 when they would start checking. Seattle is wait until the worst happens and then attempt to treat, no proactivity. I was blown away by the lack of interest and motivation!!! They scare people about steroids, and right now that is all we have to preserve them until exon skipping and other upcoming therapies. I had a cousin passed away 20 years ago of DMD and talking with my Aunt nothing has changed here in Seattle except they are willing to start steroids between 8-10 years old. I wish the MDA would take more of the funds raised and just put it into research, we are just on the cusp of so many therapies that could help these boys. We need help and my goodness the millions and millions of dollars raised every year, why isn't there a therapy yet???
When my son was first diagnosed the MDA sent me the paperwork to register him and then lost it all. It took me 3 or 4 months just to get it sent again and him finally registered. They then told me they could not find a pediatric neurologist to see him out of the MDA facility that was in my district. At the hospital he was diagnosed at they knew very little about any of the research and definately were not up on the treatment. They told me to go on the internet and research it myself. Well, I knew this wasn't the place for my son and it didn't take me long to find that DMD patients were flocking to Dr. Wong and Cinc. I knew this is where we needed to go as well. Problem was, being in an HMO, my insurance wouldn't cover anything out of state. The insurance co. told me I needed a letter of recommendation from the neurologist that diagnosed him to consider covering him out of state. When I told that neurologist my intentions and asked for the letter she argued with me and told me I was doing a diservice to my son by going there and he would get better care where he was diagnosed - the facility where she worked. (I am going to leave that facility and doctors nameless). They were not even an MDA clinic at the time although were about to start one. A doctor just out of residency from CHOP was leading up the clinic. Now I know CHOP turns out some of the best pediatric neurologists but with no established MDA there yet, no interdisciplinary clinic and a doctor with just a few years of experience with DMD boys behind his belt - it just wasn't the place I felt comfortable about my son getting the best care at. They refused to help us with going to Cincinnati and any other patients that asked. I was disgusted! Long story short, I was finally able to get the insurance approval through another doctor and I am very happy with going out of state to Cinc. for my son's care. The MDA staff there is excellent and meet with you every time you go so I agree that it depends on what MDA clininc you are going to.
I don't look to the MDA to find a cure for DMD, I look to them to help us with what we need in our daily lives (equiptment, camp, etc) and I do like our local clinic.

Same with me....and that's the problem. If the MDA was putting more towards research for a cure, we eventually wouldn't need these damn things.

Mindy, I am sure you will find many who are in agreement with you on your post. What sucks is the MDA is well known, so they get the most donations. This corporation just has too many paychecks to cut to all their employees who reside in the countless numbers of offices they have throughout the country...which they have to pay rent for as well.

I appreciate the MDA for paying for my sons boots, his scooter, his future power chair, the silly little $15 copay that i can afford, and all the other equipment he will need in the later stages of DMD...

I also despise the MDA for the very same thing, especially when they could be putting more towards research for all the disorders they support...

But, hey, if cures were found, the nations unemployment rate would grow...the MDA wouldn't want that.
Keep in mind that Dr. Wong is a MDA doc...there are a few good ones. Our local MDA just flat out told us that they have a support gropu that at the time they were re-forming, but that basically "there is nothing we can do for you". WELL, hello, welcome to the world of the MDA. So why can't they be investigated...after all if Congress can look into the BCS...why not the MDA???? As you can tell, I am not their biggest fan!

MicahsDaddy said:
I don't look to the MDA to find a cure for DMD, I look to them to help us with what we need in our daily lives (equiptment, camp, etc) and I do like our local clinic.

Same with me....and that's the problem. If the MDA was putting more towards research for a cure, we eventually wouldn't need these damn things.

Mindy, I am sure you will find many who are in agreement with you on your post. What sucks is the MDA is well known, so they get the most donations. This corporation just has too many paychecks to cut to all their employees who reside in the countless numbers of offices they have throughout the country...which they have to pay rent for as well.

I appreciate the MDA for paying for my sons boots, his scooter, his future power chair, the silly little $15 copay that i can afford, and all the other equipment he will need in the later stages of DMD...

I also despise the MDA for the very same thing, especially when they could be putting more towards research for all the disorders they support...

But, hey, if cures were found, the nations unemployment rate would grow...the MDA wouldn't want that.
I wish someone in the media would check out the MDA. I can't understand the money not being spent (200 million) and the one woman said it beautiful they show you what they are funding but in the picture it is a very small amount they are contributing. I sent them a letter when my son Tanner was diagnosed and went on You Tube under Help for Tanner and I lost it. I made no sense I was distraught but I say the MDA has so many millions and why aren't they doing anything. I told them I was going to expose them . The next day a top Dr of theirs called me. She was very nice told me everything I wanted to hear and really I haven't heard anything since. I'm sure they have a few good Drs but in the big picture this is all wrong. I'm lucky we have CHOP and they are great. They are finally making some real progress now. If the MDA would really throw some big money out we might have a great future for our boys. We all should put our brains together and do something.
Jerry Mendell at Columbus Childrens is also co-director of the MDA clinic. We go to both places, Brenda Wong in Cincinnati and Jerry Mendell in Columbus. To be honest I do not see such a huge difference b/w the two in terms of care. Actually, in some aspects I like the Columbus team better. Of course, in terms of research there is no comparison, Mendell is doing a lot more.

I have noticed that they did pay for some exon skipping work: http://www.mda.org/research/grants/2008GRANTS.pdf
One example:
Steve D Wilton Ph.D
RG Refined AO design for enhanced dystrophin exon skipping
$116,160 7/1/2007 - 6/30/2008 Year 1
$116,160 7/1/2008 - 6/30/2009 Year 2
$116,160 7/1/2009 - 6/30/2010 Year 3
Summary Investigators will refine AOs for exon skipping therapy development for DMD.

Jerry Mendell & team also got a few grants for their gene therapy work.

Is it enough, definitely not in my opinion!
After going to a few MDA meetings, I realized, that they really didn't have a lot of knowledge to tell folks, except about camp and how to apply for disability. Here in Columbus, at a meeting, the folks didn't even know about Dr. Wong and they had been meeting for years. I realize they spread money over 40 illnesses, but most of my friends who have donated, thought that DMD was mostly what they funded, especially since it is the number one genetic fatal disorder of young boys and especially since so many kids shown on the telethon over the years had DMD. They are spending a lot funds on "adult" illnesses and of course, I am prejudiced and think kids should come first, especially when we are just getting so close, finally. Obviously, spreading money over so many illnesses, doesn't allow enough to focus on the cure for 1 of them. Michelle

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