Michael Martinez will have his final interview for his green card next week and will go to Switzerland for the trials as soon as the word comes down.
This is Michael's victory. This is your victory. This is our victory!
Tonight we have truly shown that our voices are not empty, that we can make a difference in this world!
Cure Paralysis NOW!
19 May 2011
17 May 2011
Your help is urgently needed
Your help is urgently needed!! Two minutes of your time can make a difference in Michael Martinez's life. And an extra few minutes to pass this on to your friends will make an ever greater difference.
On 12 September 2010 at a race in northern California the horse Michael Martinez was jockeying clipped the heels of another horse and catapulted him head first into the track with the horse then rolling over him. After 11 hours of surgery he was left paralyzed from the injury suffered to his spinal cord.
He was turned down for the Geron clinical trials to cure paralysis, but now he has been offered a spot in the StemCellsInc. clinical trials in Switzerland. This trial will check both the safety and efficacy of neural stem cells in repairing the spinal cord.
The problem is that for him to have the optimal chance of success, he must be in Zurich within 10 days to two weeks but immigration bureaucracy is getting in the way.Martinez has applied for permanent U.S. residency and passed all required tests. But a final interview by the U.S. Immigration Department, which is said to be only a formality, is three months away. Without residency, Martinez, would likely be denied reentry into the United States.
Read the full story.
His doctor David Stefel, who I have been in contact with, is urging people to contact US immigration and California Senator Barbara Boxer to appeal to them to get Michael to Switzerland in time for the trials.
Please, please help as it will only take a second.
The form below will get an email directly to the following people.
Robin Barrett, Field Office Director, United States Citizenship and Immigration Services San Francisco office.
Barbara Boxer, US Senator from California.
Dr. David Stefel. Michael Martinez's doctor.
On 12 September 2010 at a race in northern California the horse Michael Martinez was jockeying clipped the heels of another horse and catapulted him head first into the track with the horse then rolling over him. After 11 hours of surgery he was left paralyzed from the injury suffered to his spinal cord.
He was turned down for the Geron clinical trials to cure paralysis, but now he has been offered a spot in the StemCellsInc. clinical trials in Switzerland. This trial will check both the safety and efficacy of neural stem cells in repairing the spinal cord.
The problem is that for him to have the optimal chance of success, he must be in Zurich within 10 days to two weeks but immigration bureaucracy is getting in the way.Martinez has applied for permanent U.S. residency and passed all required tests. But a final interview by the U.S. Immigration Department, which is said to be only a formality, is three months away. Without residency, Martinez, would likely be denied reentry into the United States.
Read the full story.
His doctor David Stefel, who I have been in contact with, is urging people to contact US immigration and California Senator Barbara Boxer to appeal to them to get Michael to Switzerland in time for the trials.
Please, please help as it will only take a second.
The form below will get an email directly to the following people.
Robin Barrett, Field Office Director, United States Citizenship and Immigration Services San Francisco office.
Barbara Boxer, US Senator from California.
Dr. David Stefel. Michael Martinez's doctor.
14 May 2011
Liberation Treatment becomes Liberation War
I don't have a lot to say today as the news reports say it themselves.
A revolutionary treatment for MS which is simple and is showing very clear positive outcomes.
Patient demands for access to the treatment clashing with demands from the medical establishment for more data.
Now, I won't argue against the need for better data and proper clinical trials but how long are people going to have to wait for relief from a chronic, degenerative disease?
But I know that people are going to tell me to hold on. They're going to say this is a new idea and is going to take years of testing. That we shouldn't put people at risk with something that has just come out.
And I'll answer them with the real news behind this story, that behind all the good news in this story is a piece of really sickening news. The sad part of this news is that it's not new.
We hear lots about the a Dr. Zamboni from Italy and his pioneering work in this 'new' therapy for multiple sclerosis by treating Chronic Cerebrospinal Venous Insufficiency or CCSVI with angioplasty, but there are a few names missing.
Professor Eduard von Rindfleisch who proposed a vascular cause for MS in 1863.
Dr. Tracy Jackson Putnam who also proposed a vascular cause for MS in the 1930s, and Dr. Franz Schelling.
In 1973, Dr. Schelling began investigating the causes and consequences of the enormous individual differences in the widths of the venous outlets of the human skull. The results of this study appeared, in 1978, in the official organ of the German-speaking Anatomical Societies, the "Anatomischer Anzeiger".
Schelling's 1981 discovery, at the Hospital for Nervous Diseases in Salzburg, of a striking widening of the main venous passageways through the skulls in victims of multiple sclerosis were to occupy his thoughts through the following decades. And in putting together, bit by bit, all the observations on the venous involvement in the emergence of the specific, and, in particular, cerebral lesions of multiple sclerosis, he was able to recognize their causes.
The 1981 discovery is over thirty years old but was never examined until Paolo Zamboni started studying it in 2002 and connecting his own work looking at MS as a vascular issue with Dr. Schelling's years of background studies.
According to Dr. Schelling he approached hospitals, neurosurgeons, MS societies and was never allowed to carry out his research. All told him the same thing; MS is an immune disorder, not a vascular disorder. He says, "I could never have imagined that so many doctors might have so little interest in serious scientific work and clear logical reasoning."
Had this research been carried out when the theory was first raised it would possibly have saved millions of MS sufferers including my own aunt who has had MS for about thirty years.
Let's make sure that we in the SCI community watch the medical world with informed minds and start organizing now for our War of Liberation so we don't have to wait a hundred years. The MS people have shown clearly that our voices do have an impact.
Watch the CTV news report: The Liberation War.
Read the story in the Globe and Mail: Patients flex muscle in ‘war’ over MS treatment
PS. People often tell me that I'm a little too dramatic so before people accuse me of being dramatic again by using the today's title, I'll pin it on CTV News, because it's theirs.
A revolutionary treatment for MS which is simple and is showing very clear positive outcomes.
Patient demands for access to the treatment clashing with demands from the medical establishment for more data.
Now, I won't argue against the need for better data and proper clinical trials but how long are people going to have to wait for relief from a chronic, degenerative disease?
But I know that people are going to tell me to hold on. They're going to say this is a new idea and is going to take years of testing. That we shouldn't put people at risk with something that has just come out.
And I'll answer them with the real news behind this story, that behind all the good news in this story is a piece of really sickening news. The sad part of this news is that it's not new.
We hear lots about the a Dr. Zamboni from Italy and his pioneering work in this 'new' therapy for multiple sclerosis by treating Chronic Cerebrospinal Venous Insufficiency or CCSVI with angioplasty, but there are a few names missing.
Professor Eduard von Rindfleisch who proposed a vascular cause for MS in 1863.
Dr. Tracy Jackson Putnam who also proposed a vascular cause for MS in the 1930s, and Dr. Franz Schelling.
In 1973, Dr. Schelling began investigating the causes and consequences of the enormous individual differences in the widths of the venous outlets of the human skull. The results of this study appeared, in 1978, in the official organ of the German-speaking Anatomical Societies, the "Anatomischer Anzeiger".
Schelling's 1981 discovery, at the Hospital for Nervous Diseases in Salzburg, of a striking widening of the main venous passageways through the skulls in victims of multiple sclerosis were to occupy his thoughts through the following decades. And in putting together, bit by bit, all the observations on the venous involvement in the emergence of the specific, and, in particular, cerebral lesions of multiple sclerosis, he was able to recognize their causes.
The 1981 discovery is over thirty years old but was never examined until Paolo Zamboni started studying it in 2002 and connecting his own work looking at MS as a vascular issue with Dr. Schelling's years of background studies.
According to Dr. Schelling he approached hospitals, neurosurgeons, MS societies and was never allowed to carry out his research. All told him the same thing; MS is an immune disorder, not a vascular disorder. He says, "I could never have imagined that so many doctors might have so little interest in serious scientific work and clear logical reasoning."
Had this research been carried out when the theory was first raised it would possibly have saved millions of MS sufferers including my own aunt who has had MS for about thirty years.
Let's make sure that we in the SCI community watch the medical world with informed minds and start organizing now for our War of Liberation so we don't have to wait a hundred years. The MS people have shown clearly that our voices do have an impact.
Watch the CTV news report: The Liberation War.
Read the story in the Globe and Mail: Patients flex muscle in ‘war’ over MS treatment
PS. People often tell me that I'm a little too dramatic so before people accuse me of being dramatic again by using the today's title, I'll pin it on CTV News, because it's theirs.
08 May 2011
Time for a Manhattan/Apollo Project to cure paralysis
The short survey is at the end!
I have been thinking of writing this post for some time to commemorate the 50th anniversary of Kennedy's declaration to put a man on the moon in less than ten years. I wanted to time it for 25 May when he made the declaration, but recently I got asked a good question in one of the forums I belong to so thought that I wanted to answer it with this blog.
Basically the question I got asked was, "when are you going to cure paralysis?"
It's a good question because I think it could get done within five to ten years. Not that I'm going to do it by myself, we have to do it together.
John F. Kennedy declared in 1961 that America would land a man on the moon by the end of the decade, and for good or bad, the landing took place in 1969.
Franklin Delano Roosevelt decided to build an atomic bomb, and that horror exploded in Hiroshima and Nagasaki within a few years.
Were FDR or JFK scientists? No, they were LEADERS who DECLARED what science would do. They didn't sit and study science (and I'm not saying we shouldn't), they made it a national priority and then left it to the scientists to make it happen. I'm also not saying that there was no science already in the works to complete these missions, but it wouldn't have happened if an influential world leader didn't put their might behind the projects.
They brought the scientists together, gave them their deadlines, paid for the work 100%, and gave them whatever resources they needed.
They didn't fund private companies and universities to carry out independent work for profit and/or glory. Roosevelt dealt with the only scientist, Eszilard, who argued about his patent by having him fired and not allowing him back on the team until he sold the patent at a reasonable price. You would be right to think of Don Corleone with a gun to a guy's head demanding an answer to an "offer he can't refuse".
Roosevelt didn't send Oppenheimer out on a world tour in a atomic fired wheelchair to raise money and awareness. Kennedy didn't send the Apollo Project scientists out wearing rocket costumes to do little songs and dances for rich investors and donors to get the cash for the Apollo spacecraft. No. Roosevelt and Kennedy worried about the money and let the scientists do their important work collaboratively and with a deadline in mind.
Of course there were naysayers and even some scientists said that these things couldn't be done, but they were done, because they were declared.
At this point in history we are further ahead in curing paralysis than what was scientifically available before both the Manhattan and Apollo projects were launched.
We have leading scientists in the field of spinal cord regeneration who are very clear in their statements of "not if but when" in regards to a cure for spinal cord injury.
Therefore I say the when is within five to ten years of the cure for paralysis being made a(n) (inter)national priority we can cure paralysis.
The national priority part is up to me, you, and others who want paralysis cured.
I don't care which country does it first. We must truly be internationalists to solve this problem.
Just because I'm interested in what people think is getting in the way of a cure for paralysis caused by an injury to the spinal cord, I have this short poll that I would like you to take.
*************************
 |
"I believe that this nation should commit itself to achieving the goal, before this decade is out, of landing a man on the Moon and returning him safely to the Earth. No single space project in this period will be more impressive to mankind, or more important in the long-range exploration of space; and none will be so difficult or expensive to accomplish." - President John F. Kennedy, 25 May 1961 |
Basically the question I got asked was, "when are you going to cure paralysis?"
It's a good question because I think it could get done within five to ten years. Not that I'm going to do it by myself, we have to do it together.
John F. Kennedy declared in 1961 that America would land a man on the moon by the end of the decade, and for good or bad, the landing took place in 1969.
Franklin Delano Roosevelt decided to build an atomic bomb, and that horror exploded in Hiroshima and Nagasaki within a few years.
Were FDR or JFK scientists? No, they were LEADERS who DECLARED what science would do. They didn't sit and study science (and I'm not saying we shouldn't), they made it a national priority and then left it to the scientists to make it happen. I'm also not saying that there was no science already in the works to complete these missions, but it wouldn't have happened if an influential world leader didn't put their might behind the projects.
They brought the scientists together, gave them their deadlines, paid for the work 100%, and gave them whatever resources they needed.
They didn't fund private companies and universities to carry out independent work for profit and/or glory. Roosevelt dealt with the only scientist, Eszilard, who argued about his patent by having him fired and not allowing him back on the team until he sold the patent at a reasonable price. You would be right to think of Don Corleone with a gun to a guy's head demanding an answer to an "offer he can't refuse".
Roosevelt didn't send Oppenheimer out on a world tour in a atomic fired wheelchair to raise money and awareness. Kennedy didn't send the Apollo Project scientists out wearing rocket costumes to do little songs and dances for rich investors and donors to get the cash for the Apollo spacecraft. No. Roosevelt and Kennedy worried about the money and let the scientists do their important work collaboratively and with a deadline in mind.
Of course there were naysayers and even some scientists said that these things couldn't be done, but they were done, because they were declared.
At this point in history we are further ahead in curing paralysis than what was scientifically available before both the Manhattan and Apollo projects were launched.
We have leading scientists in the field of spinal cord regeneration who are very clear in their statements of "not if but when" in regards to a cure for spinal cord injury.
Therefore I say the when is within five to ten years of the cure for paralysis being made a(n) (inter)national priority we can cure paralysis.
The national priority part is up to me, you, and others who want paralysis cured.
I don't care which country does it first. We must truly be internationalists to solve this problem.
Just because I'm interested in what people think is getting in the way of a cure for paralysis caused by an injury to the spinal cord, I have this short poll that I would like you to take.
*************************
01 May 2011
The May Day spirit to cure paralysis
First, I wish everyone a happy May Day!
For those of you who don't know May Day, it is the celebration of the international workers' movement.
We celebrate our victories.
We make noise so that the powers that be don't forget that we are here and watching.
And most importantly, we continue to struggle.
May Day was born in struggle.
It commemorates that Haymarket Massacre when police fired on a demonstration during a general strike in Chicago for the eight hour day.
May Day is international.
It is a national holiday in eighty countries and celebrated unofficially in many, many more. Canada and the US tried to purposefully depoliticize May Day by making a separate 'Labour Day', but even in these two countries May Day is making its way back.
May Day is a celebration of NOT waiting for gradual change.
Of not going cap in hand begging for improvement.
May Day is about direct action to change lives.
And May Day is an important lesson for us fighting to cure paralysis.
Our struggle must be international. Science is not confined to any one country and when the cure comes must be made available internationally.
We must not wait for doctors, scientists, or big pharma to cure us. We must struggle actively FOR a cure and AGAINST any barrier or person that stands in the way of the cure.
And now, before anyone accuses me of using the word struggle too often, I'll let you know that it was done on purpose, not because I don't own a thesaurus, and I'll leave you a quote from an anti slavery crusader. Frederick Douglass was born a slave, escaped to freedom, and campaigned again slavery his whole life.
The next time someone tells you that sitting and waiting for a cure for paralysis is the answer, and that we should not raise our voice too loudly or boldly, please tell them what Frederick Douglass said.
"If there is no struggle, there is no progress. Those who profess to favor freedom, and yet depreciate agitation, are men who want crops without plowing up the ground. They want rain without thunder and lightning. They want the ocean without the awful roar of its many waters. This struggle may be a moral one; or it may be a physical one; or it may be both moral and physical; but it must be a struggle."
PS. The list of countries to the left is not a list of countries celebrating May Day. It is a list of countries where I have received hits from the English, Japanese, Italian, French, Russian, and Spanish versions of this blog. Curing paralysis is truly an international effort.
24 April 2011
"The International Association for the Advancement of Creative Maladjustment"
As a trade unionist and socialist these words by Martin Luther King always rang true to me.
"I never intend to adjust myself to segregation and discrimination. I never intend to become adjusted to religious bigotry. I never intend to adjust myself to economic conditions that will take necessities from the many to give luxuries to the few. I never intend to adjust myself to the madness of militarism and the self defeating effects of physical violence."
And I guess now that I am a new paraplegic these words ring even truer.
After listening to this after a long time, two recent blog posts came to mind.
One was an imaginary conversation I had at my 'Spinal-Cord-Injury-group-therapy' with my counselor.
Counselor: "If you don't accept your lot in life, you will never adjust."
Dennis: "I'm not really interested in adjusting to this life. I'd rather fight for the cure. Not just because I want one, but because it's possible.""I never intend to adjust myself to segregation and discrimination. I never intend to become adjusted to religious bigotry. I never intend to adjust myself to economic conditions that will take necessities from the many to give luxuries to the few. I never intend to adjust myself to the madness of militarism and the self defeating effects of physical violence."
And I guess now that I am a new paraplegic these words ring even truer.
After listening to this after a long time, two recent blog posts came to mind.
One was an imaginary conversation I had at my 'Spinal-Cord-Injury-group-therapy' with my counselor.
Counselor: "If you don't accept your lot in life, you will never adjust."
Counselor: "Then you my friend are maladjusted and you get an F in group."
And the other was a blog post written by a friend and how he was labeled as: "An example of a person who has not reintegrated into society after a spinal cord injury." Basically he was called a maladjusted, too.
In the year 2011 is it right that we are still trying to adjust ourselves to paralysis when we have excellent results in animal studies and clinical trials in progress to cure paralysis? Actually, the thinking that we should adjust is what is stopping the cure.
I appreciate all the work done by those before us, who have struggled for better accessibility, chances at employment, etc, but as long as we continue to think in 2011 that paralysis is something that you adjust yourself to, the further we will be away from a cure.
The image of the 'happy roller' rolling through a successful life in the chair, is a myth.
For every successful businessman or career woman in a chair, there are countless more unemployed. According to a 2002 study, the unemployment rate in America for those with spinal cord injury was 63%. And to this I never intend to adjust myself.
For every happy person living a carefree life in the chair, there are countless suicides. The rate of suicide in the spinal cord injured community has been evaluated as high as five times greater than those without disability. And this I never intend to adjust myself to.
For every person living a long life in the chair, there are thousands who die prematurely due to complications stemming from their spinal cord injury. A 2009 study stated that life expectancies, "are still somewhat below life expectancies for those with no spinal cord injury." I never intend to adjust myself to a lower life expectancy than others.
For every person in a wheelchair enjoying greater accessibility in our communities, there are countless numbers of others who are confined to their homes due to poverty, pain, or vent dependence to whom ramps are meaningless. And to this too, I never intend to adjust myself.
If refusing to give up hope for a cure, when evidence supports it, is to be labeled maladjusted, then I too am a maladjusted and I'll throw my hat into the ring of "The International Association for the Advancement of Creative Maladjustment".
13 April 2011
Italian IV National Day for Persons with spinal cord injuries
The will of the people inexplicably ignored
First, it should be pointed out that the original idea to establish a National Day, was born from the need for clarity regarding the real chance to walk again felt by people living with spinal cord injuries.
By Paulo Cipolla
First, it should be pointed out that the original idea to establish a National Day, was born from the need for clarity regarding the real chance to walk again felt by people living with spinal cord injuries.
It is clear that the only way to walk again is to help researchers. Therefore a practical way is to give economic support to Italian research and disseminate correct information about paralysis from spinal cord injury. It was for this reason that a national day dedicated to finding a cure for spinal cord injury was established, as also is the case for years many other diseases.
To accomplish this, the Tuttinpiedi (All Stand Up) Committee was formed in 2004.
To promote this, the Tuttinpiedi Committee, with over 20,000 people across Italy spontaneously joining, was formed in 2004 (it should be noted that the collection of membership was suspended because it had gone well beyond what was necessary).
The Committee Tuttinpiedi represented the will of the people to address and solve the problem of identifying a cure for spinal injuries. In fact, the primary purpose of the Tuttinpiedi Committee was to establish the National Day for Research on Spinal Cord Injury.
The FAIP (Federation of Italian Paraplegic Associations) faced with such a popular initiative could not ignore this phenomenon, which until then it had seemed strange, decided to support it.
In 2008, the national day was finally establish, but:
a) The popular will of the Tuttinpiedi Committee was to establish a Day of National Research on Spinal Cord Injury.
b) The FAIP establishmed the National Day for Persons with Spinal Cord Injuries, but the word research, the heart and soul of the popular will, was deleted.
a) The popular will of the Tuttinpiedi Committee was to establish a Day of National Research on Spinal Cord Injury.
b) The FAIP establishmed the National Day for Persons with Spinal Cord Injuries, but the word research, the heart and soul of the popular will, was deleted.
The result is that today, in 2011, medical research on spinal cord injury in Italy seems abandoned and the people who believed a change would come with the establishment of a national day see their expectations thoroughly disregarded each day.
On April 4, 2011 many of us noted that:
1. In no definably important news or TV program was the fourth anniversary of the National Day for Persons with Spinal Cord injuries even mentioned.
2. In none of the events related to the national day was the topic of research for a cure for spinal cord injury even put on the agenda.
1. In no definably important news or TV program was the fourth anniversary of the National Day for Persons with Spinal Cord injuries even mentioned.
2. In none of the events related to the national day was the topic of research for a cure for spinal cord injury even put on the agenda.
For example, In Milan, at the Spinal Unit Niguarda Hospital, organized a conference entitled:
"The UN Convention on the Rights of Persons with Disabilities: a step forward for spreading the culture of independent life"
I pointed out the disappointment that the topic of research had been totally neglected, ignoring the will of the more than 20,000 people who wanted a national day for research on spinal cord injury.
Because of this brief protest I was labeled as: "An example of a person who has not reintegrated into society after a spinal cord injury."
Frankly I do not care of this.
If you share my disappointment and want share your ideas with me, you can contact me via e-mail at paolo.cipolla(@)yahoo.it
Perhaps in future we might think of a way to reassert the original spirit of the day to what people with spinal cord injury would have wanted: "A day dedicated to the research for a cure for spinal cord injuries."
Translator: Dennis Tesolat
lunedì 11 aprile 2011 CelluleStaminali&BombeAtomiche: IV Giornata Nazionale della Persona con Lesione al Midollo Spinale
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