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**ineedmyelin** · 4 Nov 2011, 5:26 PM

over a QUARTER OF A BILLION DOLLARS and there NOT working w/chronic injuries!!!!!!!!! this makes me so mad.

hell yea we better take the bull by he horns or we will never get anywhere!

**Barrington314mx** · 4 Nov 2011, 11:12 PM

Originally posted by paolocipolla View Post

Occupy the Miami Project!
http://www.youtube.com/watch?feature...v=FOzjkzwsU2M#!

Paolo

id make a trip to miami to "occupy" them!

**lynnifer** · 4 Nov 2011, 11:34 PM

When better and not spending all my money on health care appointment trips ($100 each time and 8hrs in the car), I'd definitely be into 'occupying' the Miami Project!

**jsilver** · 4 Nov 2011, 11:37 PM

Well said!!!!!

Jerry

**topperf** · 6 Nov 2011, 10:45 AM

I was aware that they where moving very little in terms of chronics, but: "Prof. Dalton Dietrich confirmed me at W2W (after my public question – I hope a video will be available) that they are not working at all on chronic SCI."

- Is outrageous. - I wonder how many chronics, that donate, are aware of this?

**Patton57** · 6 Nov 2011, 11:06 AM

This is very constructive Paolo! You have created clear and understandable measures that most people can get their heads around. When most people see the same problems for what they really are then it will be much easier to unify and get behind how best to approach solving them.

Keep up the good work and hopefully most of us will start working on understanding things better and eventually get on the cure train.

**ineedmyelin** · 6 Nov 2011, 4:45 PM

Originally posted by topperf View Post

I was aware that they where moving very little in terms of chronics, but: "Prof. Dalton Dietrich confirmed me at W2W (after my public question – I hope a video will be available) that they are not working at all on chronic SCI."

- Is outrageous. - I wonder how many chronics, that donate, are aware of this?

i used to donate to mp, i quit about 2 yrs ago. i think that it very wrong that mp and nick and marc buoniconti continue to give that they ARE focusing on chronic issues when they are not. why use marc buoniconti as the poster child.

hey marc and nick, i really thought once that you understood our plight and that you were on our side!

oh but the "fund raisers and socials" are so nice and i'm sure the condescending pats on the head feel really good. makes me sick. meanwhile in the real world we have people in allot of pain, depressed, suicidal, dealing with bb issues. do you think rick hansen and marc buoniconti worry bout money, healthcare or a support system. hell no they dont. if they even sneeze they have a bunch of people trippin over themselves to go wipe their nose especially if there is a camera around.

**Fly_Pelican_Fly** · 6 Nov 2011, 5:28 PM

Two shreds of comfort from MP (if they are indeed enough to draw comfort from) are:

1) Collaboration agreement with Invivo Therapeutics - which suggests a combinatory approach for chronics in the future. Well, I hope.

2) Dr Dietrich talked about their excitement about the F05 compound. I dont know much about it yet but it seems to be a compound targeted to tackle the glial scar - a chronic SCI challenge!

So, maybe, just maybe they are switching their attentions to chronic now. Late. Yes. But never too late to change focus.

**LetsGo** · 7 Nov 2011, 12:01 AM

Paolo, with all due respect you are wrong. What you are referencing is Dr. Dietrich saying that the first patients for the Schwann cell trial will be on acutes. That does not mean they are not conducting research on chronic injuries. THEY ARE.

First, the schwann cell trials are only 1 aspect of The Miami Project's research programs. You can't confuse the schwann cell trials with the only research they are conducting. Too many do this and it's flat out wrong.

Second, Dr. Dietrich said they will also be conducting the schwann cell trials on chronic injuries, just not until the first 8-10 acute patients have been treated. Just because they are starting with acute injuries doesn't mean that they are not conducting ongoing research on chronic injuries. They have and are. They are testing all types of animal models in both the acute and chronic setting. I think you need to accept that the biology of repairing the nervous system is much more complex than in acutes but that most scientists test their studies in both.

Third, Dr. Pearse who is one of the lead scientists on the schwann cell trial research is also conducting research using OEG cells, schwann cells, IL-10, and methylprednisolone specially for chronics. I also know he has aother ongoing studies with different combination approaches to treating chronic injuries. Again - just because the surgeries are starting with acute doesn't mean chronic research isn't ongoing.

Fourth, everyone needs to stop bashing The Miami Project and their efforts to begin with actutes. There are no other researchers in the world who are conducting rigerous, published trials that will begin with chronics. If the scientific field worldwide could do this, they would. Obviously there is a reason EVERYONE is starting with acute injuries but that doesn't mean chronic research isn't being done simultaniously.

Fifth, can you see just in this thread how one person's misunderstanding of what was said can create a cascade of false information that other people buy into and jump on the bandwagon. People need to be responsible and get their facts first before making inaccurate statements.

Sixth, I thought Dr. Silver you would be a little more professional. You know they are conducting chronic research so to stoke the flames of anger to "occupy" another organization or make people think you agree that they are not conducting chronic research is disheartening.

Seventh, Ineedmyelin, attacking Rick or Marc for not being "understanding" of the condition of those paralyzed is bullshit. Marc is a high level quad who has the same bowel and bladder problems, infections, depression and everything other emotion that has come with not being able to walk. He has dedicated his life to raising money to find this cure. You may not agree with their science but to say he hasn't done more to bring the field of spinal cord injury research foward is so insulting. Who are you to be attacking someone like that? How do you know what his financial situation is? How do you know what his health is like? Do you spend time with him? Have you dedicated your life to exclusively raising money and running an organization for SCI research? Marc has chosen this as his task and destiny. He has accepted this as what he wanted to do with his life. He wasn't forced into this. It's by choice and he has given his life to this and doesn't sit on these blogs writing and complaining about those people who are paralyzed. He is raising money to actually try to cure it. You may not agree with where they spend their money but to attack his commitment to helping you and millions others is beyond pale.

Finally, instead of beating up on organizations that raise a lot of money for research we should encourage others to emulate them. Look at cancer and AIDS and the billions that have been spent but the research didn't lead to cure. No one attacks their scientists for "wasting" money. Most scientific hypothsis never come to fruition. It's money you have to spend to get to the place where maybe a few therapies might emerge that can be effective. People are happy to keep cancer research going. Under your logic,Susan G. Koman who has raised billions should be shut down because they have found a cure to most cancers. They are a worthless organization like The Miami Project, right? There is no logic to that line of thought.

Maybe, instead of attacking the organization that are successful in raising money, it would be better to push all the other research organizations to hire more staff who specialize in fundraising so they can increase the rate at which they conduct their research. There is enough money in this world for everyone. How The Miami Project raises money should be a case study for every other organization. They are great at it and they've moved this field forward faster than one other organization in the world. They have trained more scientists who work for other educational institutions than any other organization in the world. They publish more papers than any other organization in the world. They have helped lay out the foundation for the biology of the body so that new scientists can enter this field and not have to start the beginning. It is how science progresses for all diseases.

People praise the Christopher Reeve folks when they get "big-name" celebrities to their events but if The Miami Project gets a celebrity it's a bad thing. You want to replicate what is successful. Why not encourage Dr. Silver and everyone else to hire more fundraisers. If they are good, they pay for their own salary and pay for those labs to be able to expand their research programs.

I haven't been on these board in many years and seeing these postings reminds me why I don't come here. The negativity, anger, attacks are so disgraceful. I hope no scientists read these blogs b/c to infer that they are in this field to "perpetuate" a career is sickening. If they actually read some of these comments in general they would probablly leave the field and research another disease where the people actually support them. Instead of such vicious attacks this group should be encouraging other groups to replicate success of other organizations in order to keep the field moving forward.

**Christopher Paddon** · 7 Nov 2011, 12:31 AM

Originally posted by LetsGo View Post

Paolo, with all due respect you are wrong. What you are referencing is Dr. Dietrich saying that the first patients for the Schwann cell trial will be on acutes. That does not mean they are not conducting research on chronic injuries. THEY ARE.

First, the schwann cell trials are only 1 aspect of The Miami Project's research programs. You can't confuse the schwann cell trials with the only research they are conducting. Too many do this and it's flat out wrong.

Second, Dr. Dietrich said they will also be conducting the schwann cell trials on chronic injuries, just not until the first 8-10 acute patients have been treated. Just because they are starting with acute injuries doesn't mean that they are not conducting ongoing research on chronic injuries. They are.

Third, Dr. Pearse who is one of the lead scientists on the schwann cell trial research is also conducting research using OEG cells, schwann cells, IL-10, and methylprednisolone specially for chronics. I also know he has aother ongoing studies with different combination approaches to treating chronic injuries. Again - just because the surgeries are starting with acute doesn't mean chronic research isn't ongoing.

Fourth, everyone needs to stop bashing The Miami Project and their efforts to begin with actutes. There are no other researchers in the world who are conducting rigerous, published trials that will begin with chronics. If the scientific field worldwide could do this, they would. Obviously there is a reason EVERYONE is starting with acute injuries but that doesn't mean chronic research isn't being done simultaniously.

Fifth, can you see just in this thread how one person's misunderstanding of what was said can create a cascade of false information that other people buy into and jump on the bandwagon. People need to be responsible and get their facts first before making inaccurate statements.

Sixth, I thought Dr. Silver you would be a little more professional. You know they are conducting chronic research so to stoke the flames of anger to "occupy" another organization or make people think you agree that they are not doing this is disheartening.

Seventh, attacking Rick or Marc for not being "understanding" of the condition of those paralyzed is bullshit. Marc is a high level quad who has the same bowel and bladder problems, infections, depression and everything other emotion that has come with not being able to walk. He has dedicated his life to raising money to find this cure. You may not agree with their science but to say he hasn't done more to bring the field of spinal cord injury research foward is so insulting. Who are you to be attacking someone like that?

Finally, instead of beating up on organizations that raise a lot of money for research. Look at cancer and AIDS and the billions that have been spent but the research didn't lead to cure but no one attacks their scientists for "wasted" money. People are happy to keep the research going. Because Susan G. Koman has raised billions they are a worthless organization like The Miami Project. There is no logic to that line of thought.

Maybe, instead of attacking the organization that are successful in raising money, it would be better to push all the other research organizations to hire more staff who specialize in fundraising so they can increase the rate at which they conduct their research. There is enough money in this world for everyone. How The Miami Project raises money should be a case study for every other organization. They are great at it and they've moved this field forward faster than one other organization in the world. They have trained more scientists who work for other educational institutions than any other organization in the world. They publish more papers than any other organization in the world.

People praise the Christopher Reeve folks when they get "big-name" celebrities to their events but if The Miami Project gets a celebrity it's a bad thing. You want to replicate what is successful. Why not encourage Dr. Silver and everyone else to hire more fundraisers. If they are good, they pay for their own salary and pay for those labs to be able to expand their research programs.

I haven't been on these board in many years and seeing these postings reminds me why I don't come here. The negativity, anger, attacks are so disgraceful. I hope no scientists read these blogs b/c to infer that they are in this field to "perpetuate" a career is sickening. If they actually read some of these comments in general they would probablly leave the field and research another disease where the people actually support them. Instead of such vicious attacks this group should be encouraging other groups to replicate success of other organizations in order to keep the field moving forward.

Good points LetsGo - I actually think Miami Project could be on to something (I think it has been researched exhaustively) - I'm just scared at how long it will take to get to the clinic - 5 years rather than 10 please

**LetsGo** · 7 Nov 2011, 12:42 AM

I undestand your frustration. But everyone needs to stop focusing on how long it is going to take. The truth is no one knows. It might be next year or it could be 10 years. Isn't it better to look at how can we move the field foward the fastest? I'm HIV+, so while its not the same as being paralyzed by any means, I can understand the frustrations that go with a time frame.

**Jim** · 7 Nov 2011, 11:58 AM

Originally posted by LetsGo View Post

Paolo, with all due respect you are wrong. What you are referencing is Dr. Dietrich saying that the first patients for the Schwann cell trial will be on acutes. That does not mean they are not conducting research on chronic injuries. THEY ARE.

First, the schwann cell trials are only 1 aspect of The Miami Project's research programs. You can't confuse the schwann cell trials with the only research they are conducting. Too many do this and it's flat out wrong.

Second, Dr. Dietrich said they will also be conducting the schwann cell trials on chronic injuries, just not until the first 8-10 acute patients have been treated. Just because they are starting with acute injuries doesn't mean that they are not conducting ongoing research on chronic injuries. They have and are. They are testing all types of animal models in both the acute and chronic setting. I think you need to accept that the biology of repairing the nervous system is much more complex than in acutes but that most scientists test their studies in both.

Third, Dr. Pearse who is one of the lead scientists on the schwann cell trial research is also conducting research using OEG cells, schwann cells, IL-10, and methylprednisolone specially for chronics. I also know he has aother ongoing studies with different combination approaches to treating chronic injuries. Again - just because the surgeries are starting with acute doesn't mean chronic research isn't ongoing.

Fourth, everyone needs to stop bashing The Miami Project and their efforts to begin with actutes. There are no other researchers in the world who are conducting rigerous, published trials that will begin with chronics. If the scientific field worldwide could do this, they would. Obviously there is a reason EVERYONE is starting with acute injuries but that doesn't mean chronic research isn't being done simultaniously.

Fifth, can you see just in this thread how one person's misunderstanding of what was said can create a cascade of false information that other people buy into and jump on the bandwagon. People need to be responsible and get their facts first before making inaccurate statements.

Sixth, I thought Dr. Silver you would be a little more professional. You know they are conducting chronic research so to stoke the flames of anger to "occupy" another organization or make people think you agree that they are not conducting chronic research is disheartening.

Seventh, Ineedmyelin, attacking Rick or Marc for not being "understanding" of the condition of those paralyzed is bullshit. Marc is a high level quad who has the same bowel and bladder problems, infections, depression and everything other emotion that has come with not being able to walk. He has dedicated his life to raising money to find this cure. You may not agree with their science but to say he hasn't done more to bring the field of spinal cord injury research foward is so insulting. Who are you to be attacking someone like that? How do you know what his financial situation is? How do you know what his health is like? Do you spend time with him? Have you dedicated your life to exclusively raising money and running an organization for SCI research? Marc has chosen this as his task and destiny. He has accepted this as what he wanted to do with his life. He wasn't forced into this. It's by choice and he has given his life to this and doesn't sit on these blogs writing and complaining about those people who are paralyzed. He is raising money to actually try to cure it. You may not agree with where they spend their money but to attack his commitment to helping you and millions others is beyond pale.

Finally, instead of beating up on organizations that raise a lot of money for research we should encourage others to emulate them. Look at cancer and AIDS and the billions that have been spent but the research didn't lead to cure. No one attacks their scientists for "wasting" money. Most scientific hypothsis never come to fruition. It's money you have to spend to get to the place where maybe a few therapies might emerge that can be effective. People are happy to keep cancer research going. Under your logic,Susan G. Koman who has raised billions should be shut down because they have found a cure to most cancers. They are a worthless organization like The Miami Project, right? There is no logic to that line of thought.

Maybe, instead of attacking the organization that are successful in raising money, it would be better to push all the other research organizations to hire more staff who specialize in fundraising so they can increase the rate at which they conduct their research. There is enough money in this world for everyone. How The Miami Project raises money should be a case study for every other organization. They are great at it and they've moved this field forward faster than one other organization in the world. They have trained more scientists who work for other educational institutions than any other organization in the world. They publish more papers than any other organization in the world. They have helped lay out the foundation for the biology of the body so that new scientists can enter this field and not have to start the beginning. It is how science progresses for all diseases.

People praise the Christopher Reeve folks when they get "big-name" celebrities to their events but if The Miami Project gets a celebrity it's a bad thing. You want to replicate what is successful. Why not encourage Dr. Silver and everyone else to hire more fundraisers. If they are good, they pay for their own salary and pay for those labs to be able to expand their research programs.

I haven't been on these board in many years and seeing these postings reminds me why I don't come here. The negativity, anger, attacks are so disgraceful. I hope no scientists read these blogs b/c to infer that they are in this field to "perpetuate" a career is sickening. If they actually read some of these comments in general they would probablly leave the field and research another disease where the people actually support them. Instead of such vicious attacks this group should be encouraging other groups to replicate success of other organizations in order to keep the field moving forward.

Thank you for this LetsGo.

**Jim** · 7 Nov 2011, 12:56 PM

ineedmyelin, please chill out

**ineedmyelin** · 7 Nov 2011, 1:59 PM

Originally posted by Jim View Post

ineedmyelin, please chill out

Jim, i'm in total chill mode.

i for one will not bash anymore. its unproductive and a waste of time. i appreciate each and every dr thats involved in finding therapies that might help us acutes and chronics. i also know first hand how important CARE is if we hope to one day take part in a CURE therapy.

i propose that instead of arguing that we as a community start comming up with ideas that we can act on in the coming year, 2012.

on a personal level i will work hard to attend w2w next year.
as an idea, i think we should consider organizing a trip to washington dc, to meet with those congressmen and congresswomen that are willing to listen to us.

we need to push for more nih funding. i know money/national budget is a huge obstacle right now but congress needs to understand how important it is to invest in science that could eventually lead to cures. its in everyones interest and benefit to cure some of the most costly and debilitating diseases, conditions.

an infrastructure is now in place thanks to Dr Young with scinet. as a community we need to come together and constructively push for funds as well as any and all promising therapies.

conferences like w2w are great but it seems that once the meeting are over and everyones returns to thier home that buzz/excitement seems to die down a bit. not saying that nothing good comes from these conferences just think that we more of a year long agenda so as not to lose the momentum. we can take the bull by the horns, we just shouldn't let go for a minute.

i recently saw a documentry on pbs called "Lives Worth Living". there were people with all types of disabilities fighting for their civil rights. one of the more vocal leaders was a paralyzed man in an iron lung. this man got things done by using his mind and his voice! these warriors did what they had to do and that is why the ADA bill was passed.

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