Hey Folks (Simon, hope it's okay to post such things...),
I thought that this might interest some (especially those who hang out in front of the computer a lot and want to help SCI research!). This is the charity that I have done some work with in the past and they have always been wonderful to work with. It's a long shot, but the Miami Project is a very worthwhile cause and does great work trying to not only "find a cure", but also in advancing the treatment and recovery of SCI. This is legit...not spam. Just google Kevin Everett of the Buffalo Bills (National Football League team in the States) and you will see that Miami Project is cited by several independent sources. This prize specifically will go to prevention and treatment of traumatic spinal injuries suffered by the younger folks...so all the more reason to point and click!! Thanks in advance to anyone who take the time...
VOTE TODAY AND EVERY DAY IN JUNE!
Help The Miami Project win $250,000 to
Save Lives: Prevent Unintentional Youth Injuries and Fatalities
Pepsi accepted The Miami Project's proposal for this month's
opportunity to win $250,000 but we need you to vote every day!
GO TO WWW.REFRESHEVERYTHING.COM/INJURYPREVENTION
TO CAST YOUR VOTE EACH DAY.
The ideas with the most votes are awarded grants and you may vote from multiple email addresses each day so create your voting account(s) today!
Voting starts June 1st and ends June 30th
The $250,000 grant would fund
The KiDZ Neuroscience Center at The Miami Project to Cure Paralysis
The KiDZ Neuroscience Center at The Miami Project to Cure Paralysis/University of Miami Miller School of Medicine is proposing to expand our childhood unintentional injury prevention programs in order to decrease the number of children that sustain brain and spinal cord injuries in Florida.
By voting for The Miami Project you can help to:
Reduce the number of unintentional childhood injuries and fatalities.
Educate more than 100,000 children and parents about injury prevention.
Expand our youth injury prevention programs in the State of Florida.
Privacy Policy| User Email Preferences ©2010 The Miami Project to Cure Paralysis
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Point And Click For Sci Research!
Started by
CrazyLucky
, Jun 05 2010 02:29 AM
6 replies to this topic
Top#2
FlyPelicanFly
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Posted 05 June 2010 - 03:23 PM
I dont want to sound like a bitter but I have to say that the Miami Project have had the lions share of SCI research money in the US ($250m is the figure touted) and have yet to actually have come up with a therapy that looks likely to go to human clinical trials in the next decade. I know that a lot of SCI folk have lost faith in the Miami Project to deliver a cure anytime soon. To compound things, I understand that Spinal Research UK, our leading research charity is a Miami Project supporter. It is all very well having good intentions and intelligent scientists working for you - but you also need efficient use of a limited market and budget that exists in the SCI community. It's about time SCI folk took the baton and shook up the casual, passive manner of research that exists today and concentrate on delivering to clinic and eventually the bedside. It's time for the SCI community to take responsibility for final hurdle - bludgeoning a path for therapies to the bedside!
#3
chrisarnold6
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Posted 29 June 2010 - 11:35 AM
FlyPelicanFly, on Jun 5 2010, 04:23 PM, said:
I dont want to sound like a bitter but I have to say that the Miami Project have had the lions share of SCI research money in the US ($250m is the figure touted) and have yet to actually have come up with a therapy that looks likely to go to human clinical trials in the next decade. I know that a lot of SCI folk have lost faith in the Miami Project to deliver a cure anytime soon. To compound things, I understand that Spinal Research UK, our leading research charity is a Miami Project supporter. It is all very well having good intentions and intelligent scientists working for you - but you also need efficient use of a limited market and budget that exists in the SCI community. It's about time SCI folk took the baton and shook up the casual, passive manner of research that exists today and concentrate on delivering to clinic and eventually the bedside. It's time for the SCI community to take responsibility for final hurdle - bludgeoning a path for therapies to the bedside!
Totally agree
#4
Hapahowlee
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Posted 30 June 2010 - 12:57 AM
I can't say that my husband and I have too high of a regard for the Miami Project. Yes, we're happy they have scientist researching a cure, but when we went down to check things out in 1995, we were left feeling like WTF????
My husband had been receiving newsletters for years and we would see pictures of patients trying new equipment and read about their latest accomplishments. My husband called the Miami Project and explained he would like to see their facilities and inquire about being involved in any projects.
They seemed very enthusiastic about my husband wanting to come down and possibly be a part of any experiments. Appointments were set up for my husband to obtain x-rays, an MRI which had never been done on him since he has so much wire in his neck, but they said there was a place he could go that had a special unit that would be able to pick up an image despite the wires.
An appointment was also set up with a neurologist and when my husband asked if he would be able to meet and talk to Dr. Barth Green, he was told "YES!"
I forgot to mention, the person my husband talked to inquired as to whether or not he had Medicare, which he does. Then appts. were scheduled, we booked tickets and went down to Miami.
What a bunch of bull!!! My husband had the x-rays and MRI done and had a brief exam by a neurologist who gave him a prescription for baclofen, which he didn't need or want.
When my husband inquired about meeting with Dr. Green, the neurologist told us to come back in 2 days when the doctor would be at the facility.
We went back, saw Dr. Green rushing back and forth from one room to the next. The neurologist stopped him and explained why we were there. Green looked at my husband's x-ray and MRI and as he began to talk, my husband asked if we could record what he had to say. Green took out his own recorder and told us he would send us a copy in script form.
All Green had to say beside blurting out all the medical terminology he could throw in was he didn't recommend sugery to undo the sloppy bone fusion surgery that was done back in 1985. Not exactly in those terms, but that was the jist of our meeting.
My husband actually had 2 bone fusion sugeries. The first one was done very well and the surgeon used a small piece of hip bone and a very small loop of wire. The scars are barely visible. The second surgery was done due to 2 nurses rebreaking my husband's neck (although the hospital denies this) by hiking him up in bed so hard, his head and halo hit the wall. This sugery was done with way too much bone and wire and he was left with some really horrible scars.
No report was ever sent from Dr. Green. After a year, we called and talked to the neurologist wjp examined my hubby and was told the Miami Project is not looking for any patients for research purposes at this time. We went down there for NOTHING!!! Actually no, I take that back. It was a way for them to make money off of Medicare and my husband.
The only facility we saw beside the diagnostic place for the x-ray and MRI was Jackson Memorial Hospital. We didn't see any part of the Miami Project at all.
Also to rub salt in the wound, we received a letter a few years back from Marc Buoniconti's mother, Terry about how she felt when she received the call that her son had broken his neck and blah, blah, blah. The letter of course was to ask for a donation, but the closing of the letter was something to the effect of "how would you feel if you received a call like I did?" They don't even have their mailing list coded to show whether or not the person on the mailing list already has an SCI. That was a real slap in the face.
We did have fun partying at the bars while staying on Miami Beach. That was the only good thing about that trip.
My husband had been receiving newsletters for years and we would see pictures of patients trying new equipment and read about their latest accomplishments. My husband called the Miami Project and explained he would like to see their facilities and inquire about being involved in any projects.
They seemed very enthusiastic about my husband wanting to come down and possibly be a part of any experiments. Appointments were set up for my husband to obtain x-rays, an MRI which had never been done on him since he has so much wire in his neck, but they said there was a place he could go that had a special unit that would be able to pick up an image despite the wires.
An appointment was also set up with a neurologist and when my husband asked if he would be able to meet and talk to Dr. Barth Green, he was told "YES!"
I forgot to mention, the person my husband talked to inquired as to whether or not he had Medicare, which he does. Then appts. were scheduled, we booked tickets and went down to Miami.
What a bunch of bull!!! My husband had the x-rays and MRI done and had a brief exam by a neurologist who gave him a prescription for baclofen, which he didn't need or want.
When my husband inquired about meeting with Dr. Green, the neurologist told us to come back in 2 days when the doctor would be at the facility.
We went back, saw Dr. Green rushing back and forth from one room to the next. The neurologist stopped him and explained why we were there. Green looked at my husband's x-ray and MRI and as he began to talk, my husband asked if we could record what he had to say. Green took out his own recorder and told us he would send us a copy in script form.
All Green had to say beside blurting out all the medical terminology he could throw in was he didn't recommend sugery to undo the sloppy bone fusion surgery that was done back in 1985. Not exactly in those terms, but that was the jist of our meeting.
My husband actually had 2 bone fusion sugeries. The first one was done very well and the surgeon used a small piece of hip bone and a very small loop of wire. The scars are barely visible. The second surgery was done due to 2 nurses rebreaking my husband's neck (although the hospital denies this) by hiking him up in bed so hard, his head and halo hit the wall. This sugery was done with way too much bone and wire and he was left with some really horrible scars.
No report was ever sent from Dr. Green. After a year, we called and talked to the neurologist wjp examined my hubby and was told the Miami Project is not looking for any patients for research purposes at this time. We went down there for NOTHING!!! Actually no, I take that back. It was a way for them to make money off of Medicare and my husband.
The only facility we saw beside the diagnostic place for the x-ray and MRI was Jackson Memorial Hospital. We didn't see any part of the Miami Project at all.
Also to rub salt in the wound, we received a letter a few years back from Marc Buoniconti's mother, Terry about how she felt when she received the call that her son had broken his neck and blah, blah, blah. The letter of course was to ask for a donation, but the closing of the letter was something to the effect of "how would you feel if you received a call like I did?" They don't even have their mailing list coded to show whether or not the person on the mailing list already has an SCI. That was a real slap in the face.
We did have fun partying at the bars while staying on Miami Beach. That was the only good thing about that trip.
#5
StemCells&AtomBombs
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#6
mellowgator
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Posted 04 July 2010 - 03:31 PM
dear hapa,
i'm sorry that your experience with the miami project didn't go well. i've also been evaluated by barth green. i went very soon after my injury and was introduced to biofeed back. i decided the 3 hour drive to miami was too much so i quit.
i think the world of the buonocontis. my sister is married to terry's son nick and they truely want to find a cure and their intentions are good. they can not possibly use all the people interested in trails. they also have my information in case they want to include me in their study. i will let terry know that her letters are going to sci as well as others. i'm sorry this bothered you so.
mellowgator
i'm sorry that your experience with the miami project didn't go well. i've also been evaluated by barth green. i went very soon after my injury and was introduced to biofeed back. i decided the 3 hour drive to miami was too much so i quit.
i think the world of the buonocontis. my sister is married to terry's son nick and they truely want to find a cure and their intentions are good. they can not possibly use all the people interested in trails. they also have my information in case they want to include me in their study. i will let terry know that her letters are going to sci as well as others. i'm sorry this bothered you so.
mellowgator
hi fellow gimps! i'm a c 6/7 quad and have been injured since 1986. i was in a roll over hydroplane accident and it took hours for the paramedics to get me out of the car in the pouring rain. that definately wasn't my day. but alas life goes on!
#7
TnVol
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Posted 20 July 2010 - 08:06 PM
For the last two years I helped with the Charleston chapter of the Buoniconti Fund- Miami Project fundraiser.
This was because I met a couple of Marc's college buddies from the Citadel. I believe he has recently reestablished relationships with The Citadel (where his injury occurred)
The Miami Project seems to be a good organization, however, I have never been there and don't have the first-hand experience that you have. I also didn't know any other organizations at that time and just wanted to help.
I have read through the archives and haven't seen anything about Geron Pharmaceuticals (geron.com) Does anyone know anything about them? I believe they are in phase 1 of FDA approval. They are primarily focusing on thoracic level acute injuries.
Still new to this site so if I post something in the wrong place or start a new topic when I shouldn't please feel to free reprimand me, but only a wrist slap please, I am not into spanking anymore! (haha)
Rich,
Far better it is to dare mighty things, to win glorious triumphs, even though checkered by failure, than to take rank with those poor spirits who neither enjoy much nor suffer much because they live in the grey twilight that knows not victory nor defeat. T. Roosevelt
This was because I met a couple of Marc's college buddies from the Citadel. I believe he has recently reestablished relationships with The Citadel (where his injury occurred)
The Miami Project seems to be a good organization, however, I have never been there and don't have the first-hand experience that you have. I also didn't know any other organizations at that time and just wanted to help.
I have read through the archives and haven't seen anything about Geron Pharmaceuticals (geron.com) Does anyone know anything about them? I believe they are in phase 1 of FDA approval. They are primarily focusing on thoracic level acute injuries.
Still new to this site so if I post something in the wrong place or start a new topic when I shouldn't please feel to free reprimand me, but only a wrist slap please, I am not into spanking anymore! (haha)
Rich,
Far better it is to dare mighty things, to win glorious triumphs, even though checkered by failure, than to take rank with those poor spirits who neither enjoy much nor suffer much because they live in the grey twilight that knows not victory nor defeat. T. Roosevelt
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