Thought I would draw your attention the website of the Institute of Spinal Cord Injury
and their recent video advertisement
The Institute of Spinal Cord Injury (ISCI) was founded on 11 December 2007 at the initative of an Icelandic mother, Auður Guðjónsdóttir, who has for twenty years campaigned strongly for an Icelandic led international effort to improve spinal cord injury (SCI) treatment. Her SCI advocacy efforts and perseverance in the face of adversity have drawn widespread attention. The Icelandic government, businesses and individuals have joined forces to launch ISCI in support of her cause.
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Institute Of Spinal Cord Injury
Started by
guido
, Feb 06 2010 05:37 PM
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#1
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Posted 06 February 2010 - 05:37 PM
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#3
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Posted 02 November 2010 - 09:45 PM
I'm adding this, as it is sometimes heartening to note that there are people making big efforts on behalf of progress & research for SCI, even if progress seems slow. I was sent this message in an email from Auður Guðjónsdóttir, chairman of ISCI (www.isci.is) a few days ago which says:
At the Nordic Council Session November 2010 the Icelandic PM division will bring forward a proposal to the Nordic Council which reads as follows:The Icelandic division of the Nordic Council Session 2010 proposes that the Nordic Council recommends to the Council of Ministers to assign to a committee consisting of scientists and medical experts the task to gather and review information and write a report of all material concerning Nordic research and other research and treatments on the subject of spinal cord injuries (SCI) and to make propositions and recommendations regarding improvements in further research and treatment on SCI.This proposal expresses the request of Iceland that the Nordic countries jointly take the first steps in an organised search for cure for SCI. By viewing all publications of basic research and experimental treatments for SCI the last 10 years, it might be possible to integrate the scientific knowledge that currently exists and thus raise the status of treatments of SCI further towards a cure. The proposal is submitted at the request of The Institute of Spinal Cord Injury, Iceland (ISCI), The Icelandic Nurses´ Association and the Medical Association of Iceland and is presented because of how slowly progress is made in the search for cure of SCI.
And an update today:
The Nordic council session is now here in Iceland and I have been at the meeting all day to talk to politicans from all the countries and raise their awareness on SCI.I talked to few people in the welfare committee and they were very pleased with the proposal. A Finish PM stood upp at the meeting and said that this is exacly what the world needs - to integrate knowledge.The worste thing is that maybe we have to wait for one year to find out if the Nordic council approve the proposal or not. First the welfare committee has to talk about it and so the ministerial committee. Everything is so much of a democracy in the Scandinavian countries.But if they approve the proposal it could make a change.
At the Nordic Council Session November 2010 the Icelandic PM division will bring forward a proposal to the Nordic Council which reads as follows:The Icelandic division of the Nordic Council Session 2010 proposes that the Nordic Council recommends to the Council of Ministers to assign to a committee consisting of scientists and medical experts the task to gather and review information and write a report of all material concerning Nordic research and other research and treatments on the subject of spinal cord injuries (SCI) and to make propositions and recommendations regarding improvements in further research and treatment on SCI.This proposal expresses the request of Iceland that the Nordic countries jointly take the first steps in an organised search for cure for SCI. By viewing all publications of basic research and experimental treatments for SCI the last 10 years, it might be possible to integrate the scientific knowledge that currently exists and thus raise the status of treatments of SCI further towards a cure. The proposal is submitted at the request of The Institute of Spinal Cord Injury, Iceland (ISCI), The Icelandic Nurses´ Association and the Medical Association of Iceland and is presented because of how slowly progress is made in the search for cure of SCI.
And an update today:
The Nordic council session is now here in Iceland and I have been at the meeting all day to talk to politicans from all the countries and raise their awareness on SCI.I talked to few people in the welfare committee and they were very pleased with the proposal. A Finish PM stood upp at the meeting and said that this is exacly what the world needs - to integrate knowledge.The worste thing is that maybe we have to wait for one year to find out if the Nordic council approve the proposal or not. First the welfare committee has to talk about it and so the ministerial committee. Everything is so much of a democracy in the Scandinavian countries.But if they approve the proposal it could make a change.
Edited by guido, 02 November 2010 - 09:45 PM.
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Posted 03 November 2010 - 12:31 PM
Very interesting and worth keeping an eye on. The Scandinavians are good at social responsibility and if they get the go ahead should help to push this on well.
Good to see someone in Europe trying to make a difference.
Good to see someone in Europe trying to make a difference.
Impossible only describes a problem that needs viewed from a different perspective
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Posted 03 November 2010 - 06:35 PM
I am adding some quotes from Wise Young's Curecare thread about the stem cell Tzu Chi Conference in Hualien, Taiwan, because it demonstrates further how scientists around the globe are networking with one another to promote advanced treatments for SCI and stroke. The conference was last April:
"Four speakers at the Tzu Chi meeting reported positive clinical trial results using a variety of stem cells to treat neurological conditions:
• Ivar Mendez. He is the head of neurosurgery at Dalhousie University in Halifax, Nova Scotia, Canada. He presented results from his trial treating 10 patients with Parkinson's disease with fetal dopaminergic cells. All of his patients are much improved and many do not require any dopaminergic therapies. He is starting a multicenter international trial using his new method of transplanting the cells into both the basal ganglia and substantia nigra.
• Osamu Honmou. He is the head of a department of neural repair and therapeutics at Sapporo University in Japan. He has isolated a special mesenchymal stem cell, infusing about a million cells intravenously into patients within 6 months after a stroke, and showing dramatic improvements in the patients. It was really quite impressive and I am (for the first time) convinced that some cells can "home" into the brain. He has animal data also for the efficacy of bone marrow cells for spinal cord injury.
• Alok Sharma. He is the head of neurosurgery at the LTMG Hospital in Mumbain. He treated over 200 patients with a variety of neurological disorders, injecting autografts of mononuclear intrathecally into the patients. He is getting some effects of about 50% of the patients that received the treatments. He is planning to go on to controlled clinical trials for spinal cord injury.
• Shinn-Zong (John) Lin. He is the professor of neurosurgery and superintendent of the China Medical University Hospital. He treated chronic stroke patients with peripheral blood CD34+ cells injected into the brain and found substantial improvement of function. He is now starting clinical trials using CD34+ cells obtained from HLA-matched umbilical cord blood cells.
In addition several speakers presented plans for clinical trials that will or have started, including Ed Wirth from Geron and Waisan Poon (ChinaSCINet) for spinal cord injury and Henrich Cheng for stroke.
Wise.
I strongly encourage investigators to take their treatments to clinical trials as soon as feasible. The reason why we had this meeting was to get investigators together in a small meeting where they can talk and interact. Many of the investigators have never met each other and, in some cases, don't even know of each other's work. For example, Ivar Mendez has never met Osamu Honmou or any of the other speakers. I think that everybody saw something at this meeting that is truly novel, i.e. that they had not seen before. That is one of the reasons why this meeting was so great. I am certain that everybody is rushing back to their home institutions to apply what they learned and to push harder for clinical trials.
The goal of the meeting was to assess the latest advances in stem cell research and how these advances affect assessment of therapies in animal spinal cord injury models and human clinical trials. In addition to having this meeting, I also wanted to speakers to experience Tzu Chi. This is one of the great medical care institutions of the world. They are caring and compassionate beyond imagination. They have taken clinical trials and care of patients to newer and higher level. I think all the speakers were stunned by what they saw at Tzu Chi."
YOu know, i was given the option of doing 3 months of rehab at Huelin and i turned it down because it was far for my mate to visit. If I had known it was one of the best centers anywhere I would have gone and managed without my mate.
"Four speakers at the Tzu Chi meeting reported positive clinical trial results using a variety of stem cells to treat neurological conditions:
• Ivar Mendez. He is the head of neurosurgery at Dalhousie University in Halifax, Nova Scotia, Canada. He presented results from his trial treating 10 patients with Parkinson's disease with fetal dopaminergic cells. All of his patients are much improved and many do not require any dopaminergic therapies. He is starting a multicenter international trial using his new method of transplanting the cells into both the basal ganglia and substantia nigra.
• Osamu Honmou. He is the head of a department of neural repair and therapeutics at Sapporo University in Japan. He has isolated a special mesenchymal stem cell, infusing about a million cells intravenously into patients within 6 months after a stroke, and showing dramatic improvements in the patients. It was really quite impressive and I am (for the first time) convinced that some cells can "home" into the brain. He has animal data also for the efficacy of bone marrow cells for spinal cord injury.
• Alok Sharma. He is the head of neurosurgery at the LTMG Hospital in Mumbain. He treated over 200 patients with a variety of neurological disorders, injecting autografts of mononuclear intrathecally into the patients. He is getting some effects of about 50% of the patients that received the treatments. He is planning to go on to controlled clinical trials for spinal cord injury.
• Shinn-Zong (John) Lin. He is the professor of neurosurgery and superintendent of the China Medical University Hospital. He treated chronic stroke patients with peripheral blood CD34+ cells injected into the brain and found substantial improvement of function. He is now starting clinical trials using CD34+ cells obtained from HLA-matched umbilical cord blood cells.
In addition several speakers presented plans for clinical trials that will or have started, including Ed Wirth from Geron and Waisan Poon (ChinaSCINet) for spinal cord injury and Henrich Cheng for stroke.
Wise.
I strongly encourage investigators to take their treatments to clinical trials as soon as feasible. The reason why we had this meeting was to get investigators together in a small meeting where they can talk and interact. Many of the investigators have never met each other and, in some cases, don't even know of each other's work. For example, Ivar Mendez has never met Osamu Honmou or any of the other speakers. I think that everybody saw something at this meeting that is truly novel, i.e. that they had not seen before. That is one of the reasons why this meeting was so great. I am certain that everybody is rushing back to their home institutions to apply what they learned and to push harder for clinical trials.
The goal of the meeting was to assess the latest advances in stem cell research and how these advances affect assessment of therapies in animal spinal cord injury models and human clinical trials. In addition to having this meeting, I also wanted to speakers to experience Tzu Chi. This is one of the great medical care institutions of the world. They are caring and compassionate beyond imagination. They have taken clinical trials and care of patients to newer and higher level. I think all the speakers were stunned by what they saw at Tzu Chi."
YOu know, i was given the option of doing 3 months of rehab at Huelin and i turned it down because it was far for my mate to visit. If I had known it was one of the best centers anywhere I would have gone and managed without my mate.
Edited by Tetracyclone, 03 November 2010 - 06:38 PM.
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#8
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Posted 31 January 2011 - 07:13 PM
Just had an email update from Audur in Iceland with the press release the Icelandic Parliament sent to the Icelandic media after the approval of the Nordic Council.
This is a case of real hard work. Having tried two bigger fish, they have gone back to what they can really hope to change, in the hope that by making progress there, they will be able to build on it elsewhere.
If I didn't mention earlier, Audur's own daughter was paralysed in a car accident in the 1980s, so this is something really close to her heart, and she comes at this with the medical experience of a theatre nurse.
It has been translated into English:
The Icelandic delegation's proposal on spinal cord injury is approved by the NordicCouncil Welfare Committee.
On Wednesday, theNordic Council Welfare Committee approved the Icelandic delegation's proposalfor co-ordinated information on spinal cord injuries in the Nordic region.
The proposalrecommends the appointment of a committee of scientists and physicians tocollect information and prepare an overview of Nordic and other research andtreatment of spinal cord injury, in the form a report, and to prepare proposalsfor improvements in the research and treatment of spinal cord injuries.
Approval was alsogiven to a proposal to investigate the extent to which people with spinal cordinjuries are active in the employment market and to embark on the creation of aNordic quality file on spinal cord injuries.
Approximately 1000Nordic citizens suffer spinal cord injuries every year. Progress in the treatment of spinal cordinjuries has been much slower in recent decades than in other fields ofmedicine, such as in cancer, cardiovascular and ophthalmological treatment.
As a result of theWelfare Committee's approval, the proposal will now be submitted for discussionat the annual Session of the Nordic Council in Copenhagen in November.
The Nordic Council wasformed in 1952. The Council has 87elected members from Denmark, Finland, Iceland, Norway and Sweden as well asfrom the three autonomous territories: the Faroe Islands, Greenland and Åland.
This is a case of real hard work. Having tried two bigger fish, they have gone back to what they can really hope to change, in the hope that by making progress there, they will be able to build on it elsewhere.
If I didn't mention earlier, Audur's own daughter was paralysed in a car accident in the 1980s, so this is something really close to her heart, and she comes at this with the medical experience of a theatre nurse.
It has been translated into English:
The Icelandic delegation's proposal on spinal cord injury is approved by the NordicCouncil Welfare Committee.
On Wednesday, theNordic Council Welfare Committee approved the Icelandic delegation's proposalfor co-ordinated information on spinal cord injuries in the Nordic region.
The proposalrecommends the appointment of a committee of scientists and physicians tocollect information and prepare an overview of Nordic and other research andtreatment of spinal cord injury, in the form a report, and to prepare proposalsfor improvements in the research and treatment of spinal cord injuries.
Approval was alsogiven to a proposal to investigate the extent to which people with spinal cordinjuries are active in the employment market and to embark on the creation of aNordic quality file on spinal cord injuries.
Approximately 1000Nordic citizens suffer spinal cord injuries every year. Progress in the treatment of spinal cordinjuries has been much slower in recent decades than in other fields ofmedicine, such as in cancer, cardiovascular and ophthalmological treatment.
As a result of theWelfare Committee's approval, the proposal will now be submitted for discussionat the annual Session of the Nordic Council in Copenhagen in November.
The Nordic Council wasformed in 1952. The Council has 87elected members from Denmark, Finland, Iceland, Norway and Sweden as well asfrom the three autonomous territories: the Faroe Islands, Greenland and Åland.
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#9
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Posted 12 February 2011 - 12:52 PM
Iceland's proposal for spinal cord injury research team approved. Read more...
Edited by guido, 12 February 2011 - 12:53 PM.
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Posted 19 April 2011 - 06:31 AM
Hello - am a bit behind on sending in the last 2 reports I have been given.
************************
1.
Hello Guy
Here attachted is a declaration of the government of Iceland regarding SCI. If you still have the opportunity to post it at apparalyzed please be so kind to do so for me. The declaration has been translated into English.
What this means is that the ministers will talk about SCI wherever they have the opportunity to do so, like at conferences at the WHO,Council of Europe and at the Nordic Council. The first thing is to raise awereness at the political side. They are the one who can change things if they really are willing to do so.
Our good prime minister, Johanna Sigurdardottir, did this for the international SCI community. I talked to her and asked her to bring the proposal forward to the government, and she did so - and they agreed. We can do things like this here in Iceland because we are so few - just 300.000 people and everybody knows everybody.
Two weeks ago the president of FiA, Jean Todt ( Formula1) was here in Iceland for few hours. He had a meeting with the Icelandic president because of the UN decade of action regarding the traffic. I talked briefly to Mr. Todt in the phone about to raise awereness on SCI. I have a meeting at the Foreign ministry coming Friday and with the Icelandic president coming Monday. We are very interested in to have some famous person - hopefully from Formula 1, as a goodwill ambassador for SCI.
We will see how things goes on:)
All the best to you Guy and thank you.
Audur.
************************
2. http://www.prweb.com...oad/8269677.pdf
Neuro Science for Nerve Regeneration gets Go-Ahead for Pioneering Surgical Implant to Regenerate Nerves in Spinal Cord Injuries
Professor Mark Dallamore and his team have been licenced in Sri Lanka to surgically implant chips to regenerate nerves in patients with spinal cord injuries, enabling them to regain mobility and bodily functions.
London, UK (PRWEB UK) 6 April 2011 -- Professor Mark Dallamore announced today that he and his team have been licenced in Sri Lanka to perform ground-breaking surgery on patients suffering paralysis due to spinal cord injury. This innovative procedure will insert medical implants to regenerate nerves and enable patients to regain mobility and bodily functions.
The implants have been developed in Japan, based on proven implant technology. The implant system uses the Peripheral Nervous System (PNS) to sense data normally directed to the Central Nervous System (CNS) and transmits it to the appropriate nerves below the damaged area – as the spinal cord injury interrupts the normal working of the CNS. Patents on the implants are pending.
Professor Dallamore said “This is the culmination of all the research undertaken since first achieving nerve regeneration on a paraplegic patient in 2003. We already have several patients in line for the procedure, the first of which is scheduled for the autumn of 2011.”
The PNS consists of the nerves and ganglia that lie outside the brain and spinal cord. Its main function is to connect the CNS to the limbs and organs.Professor Mark Dallamore is a Harley Street Neuroscientist, also practising at the Wellbeck Hospital, London, UK and the Nawaloka Hospital, Colombo, Sri Lanka. He specialises in treating spinal cord injuries, and in nerve regeneration for sports injuries. He is Neuroscientist for the 2012 Sri Lankan Olympic Team.
Contact Information Doroda Iadko Neuro Science of Nerve Regeneration International http://www.neuroscie...nerationint.com 020 7935 7437
************************
1.
Hello Guy
Here attachted is a declaration of the government of Iceland regarding SCI. If you still have the opportunity to post it at apparalyzed please be so kind to do so for me. The declaration has been translated into English.
What this means is that the ministers will talk about SCI wherever they have the opportunity to do so, like at conferences at the WHO,Council of Europe and at the Nordic Council. The first thing is to raise awereness at the political side. They are the one who can change things if they really are willing to do so.
Our good prime minister, Johanna Sigurdardottir, did this for the international SCI community. I talked to her and asked her to bring the proposal forward to the government, and she did so - and they agreed. We can do things like this here in Iceland because we are so few - just 300.000 people and everybody knows everybody.
Two weeks ago the president of FiA, Jean Todt ( Formula1) was here in Iceland for few hours. He had a meeting with the Icelandic president because of the UN decade of action regarding the traffic. I talked briefly to Mr. Todt in the phone about to raise awereness on SCI. I have a meeting at the Foreign ministry coming Friday and with the Icelandic president coming Monday. We are very interested in to have some famous person - hopefully from Formula 1, as a goodwill ambassador for SCI.
We will see how things goes on:)
All the best to you Guy and thank you.
Audur.
************************
2. http://www.prweb.com...oad/8269677.pdf
Neuro Science for Nerve Regeneration gets Go-Ahead for Pioneering Surgical Implant to Regenerate Nerves in Spinal Cord Injuries
Professor Mark Dallamore and his team have been licenced in Sri Lanka to surgically implant chips to regenerate nerves in patients with spinal cord injuries, enabling them to regain mobility and bodily functions.
London, UK (PRWEB UK) 6 April 2011 -- Professor Mark Dallamore announced today that he and his team have been licenced in Sri Lanka to perform ground-breaking surgery on patients suffering paralysis due to spinal cord injury. This innovative procedure will insert medical implants to regenerate nerves and enable patients to regain mobility and bodily functions.
The implants have been developed in Japan, based on proven implant technology. The implant system uses the Peripheral Nervous System (PNS) to sense data normally directed to the Central Nervous System (CNS) and transmits it to the appropriate nerves below the damaged area – as the spinal cord injury interrupts the normal working of the CNS. Patents on the implants are pending.
Professor Dallamore said “This is the culmination of all the research undertaken since first achieving nerve regeneration on a paraplegic patient in 2003. We already have several patients in line for the procedure, the first of which is scheduled for the autumn of 2011.”
The PNS consists of the nerves and ganglia that lie outside the brain and spinal cord. Its main function is to connect the CNS to the limbs and organs.Professor Mark Dallamore is a Harley Street Neuroscientist, also practising at the Wellbeck Hospital, London, UK and the Nawaloka Hospital, Colombo, Sri Lanka. He specialises in treating spinal cord injuries, and in nerve regeneration for sports injuries. He is Neuroscientist for the 2012 Sri Lankan Olympic Team.
Contact Information Doroda Iadko Neuro Science of Nerve Regeneration International http://www.neuroscie...nerationint.com 020 7935 7437
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Posted 19 April 2011 - 09:55 AM
I read Dr. Dallamore's website and he is both interesting and puzzling. He certainly has the ability to attract support, so whatever the efficacy of this treatment, it should become clear within a few years.
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#12
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Posted 19 May 2011 - 08:54 PM
"Spinal cord injury discussed at WHO World Health Assembly."
Read more: http://www.icenews.i...ealth-assembly/
If we want to raise awareness of SCI - then it's not enough to produce "preaching to the converted" websites such as www.everyeighthours.com
We must join the movers and shakers from different countries and build a solid single movement that may have influence.
Edited by guido, 19 May 2011 - 08:55 PM.
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#13
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Posted 20 May 2011 - 01:24 AM
Go guido. Keep kicking our butts all the way to Geneva. I finally joined justadollarplease.org this week.
Edited by Tetracyclone, 20 May 2011 - 01:30 AM.
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#14
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Posted 21 May 2011 - 09:22 AM
HI Tetra
I think this is our own private thread!!! I just find it frustrating because this lady is working so hard at the correct level. She is completely without ego or personal agenda and has come at this because she is a mother who loves her daughter - who is SCI. And she sees how it affects others in the same position and so has set out to do something.
The point of what she is doing is the unglamorous work of knocking on politicians and policy maker's doors - and she is getting so little (NO) support from SCI organisations. With support from the people who claim to be raising awareness for SCI - her efforts would go so much further.
If Apparelyzed members reading this - who are involved in SCI charities and organisations - were to say to their own, "Hey, let's just ask the question: What is this lady doing? Could we work together somehow and achieve more together, nationally AND internationally?" it would be a worthwhile question.
Guido
I think this is our own private thread!!! I just find it frustrating because this lady is working so hard at the correct level. She is completely without ego or personal agenda and has come at this because she is a mother who loves her daughter - who is SCI. And she sees how it affects others in the same position and so has set out to do something.
The point of what she is doing is the unglamorous work of knocking on politicians and policy maker's doors - and she is getting so little (NO) support from SCI organisations. With support from the people who claim to be raising awareness for SCI - her efforts would go so much further.
If Apparelyzed members reading this - who are involved in SCI charities and organisations - were to say to their own, "Hey, let's just ask the question: What is this lady doing? Could we work together somehow and achieve more together, nationally AND internationally?" it would be a worthwhile question.
Guido
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Posted 12 July 2011 - 08:07 AM
News Article:
Nordic Welfare Ministers Discuss Spinal Cord Injuries.
(click on title to read)
Quietly, in the background, (and trying to get further towards the foreground) Audur is still working away for us.
Nordic Welfare Ministers Discuss Spinal Cord Injuries.
(click on title to read)
Quietly, in the background, (and trying to get further towards the foreground) Audur is still working away for us.
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#16
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Posted 12 July 2011 - 03:40 PM
guido, on 12 July 2011 - 08:07 AM, said:
News Article:
Nordic Welfare Ministers Discuss Spinal Cord Injuries.
(click on title to read)
Quietly, in the background, (and trying to get further towards the foreground) Audur is still working away for us.
Nordic Welfare Ministers Discuss Spinal Cord Injuries.
(click on title to read)
Quietly, in the background, (and trying to get further towards the foreground) Audur is still working away for us.
EC
Impossible only describes a problem that needs viewed from a different perspective
#17
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Posted 17 July 2011 - 11:18 AM
This is a far more interesting and significant development in Europe. The first step to adding functional return and regenerative medicine to the mandate of the National Spinal Injuries Associations as well as pushing for funding at EU level.
http://www.escif.org..._statement_.pdf
Well done ESCIF!
http://www.escif.org..._statement_.pdf
Well done ESCIF!
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