When people learn to spit together, they'll make a tidal wave

These are the results from a small poll I conducted. You can find the poll here.

I know that some are going to say that it's a pretty sad result. Only 104 responses? Only 43 people left contact details? I'll answer them that it's got to start somewhere. Working as a union organizer I have been to many meetings with only me. Have stood out on very cold nights in front of workplaces to hand out leaflets just to find out no one was interested. Hell, I've even traveled two or three hours to organizing meetings which were attended only by me.

I'm from the three is better than one club, so I am very happy that this first group has come forward. It will take time for us to get on our feet, but we'll get there. I heard a quote once in a movie, but I don't remember what movie and it went something like this: "When people are learn to spit together, they'll make a tidal wave."

The comments are unedited and in them I'll hope you'll find some good ideas for future activities and also see regular people's raw passion for getting out of their chairs, and the barriers that they believe are stopping them. Some of these feelings may shock you.

So without further adieu. The survey says...

104 Responses.

Question 1. Which statement best describes you?

73.02% have a spinal cord injury.

22.22% have a close family member or friend who have a spinal cord injury.

4.76% don’t really have any close connection to those with a spinal cord injury.

Question 2. Do you believe that finding a cure for paralysis caused by damage to the spinal cord is possible within the next five to ten years?

78.46% YES

4.62% NO

16.92% Undecided.

Question 3. What do you think is standing in the way of a cure for paralysis at the current time? In order based on the most responses:

Lack of government funding.

Lack of collaboration amongst scientists.

Lack of unity within SCI community.

Failure of the big Spinal Cord Injury/Paralysis groups to fund clinical trials.

Lack of the science necessary to cure paralysis.

I don’t know.

Question 4. What other things do you think are getting in the way of a cure for paralysis?

l  egos

l  not as many clinical trials as there should be

l  FDA and other regulatory agencies

l  the religious right wing fanatics

l  Most people (political leaders, industry leaders, do-gooder celebrities, doctors and just "people") don't care. Curing paralysis is very low on the list of priorities.

l  funding funding funding

l  Visibility , there walks for breast cancer, autism, Alzheimer’s AIDs.

l  Greed. When a wheelchair costs $4500 plus $1500 for wheels plus drug companies’ stand to lose money if a cure is found. They'd rather "treat" than "cure"

l  religious ignorance, apathy

l  Lack of young students entering neuroscience. Lack of wealthy people sympathetic to the course.

l  It is not a priority for the majority of this country (USA). Politicians want to be in office and we (SCIs) are a huge minority compared to other groups to lobby for.

l  more strong international communication between people, scientists and relatives but most of all priority to the governments and medical community

l  press stories showing sci victims as happy with their lives and inspirational. Someone should do an interview asking Rick Hansen about his bowel program or his lack of sexual function...

l  Fear of failure by scientists and FDA, when, failure is the greatest teacher.

l  big picture is missing + lack of somebody making the decision, as explained in your blog, to cure paralysis. brain paralysis of sci community. lack of a big guy or big guy's daughter's breaking his/her neck

l  Courage

l  Small sci community, making them not a very profitable venture to find a cure by commercial entities. Thus, we really need to engage government to fund sci cure efforts

l  Push from our nations leaders to make cures for paralysis a priority.

l  The common idea that it's just sitting in a wheel chair doesn't help. Most people with no knowledge of the problem can't even imagine the threats to health faced by wheel chair users.

l  Society doesn't view it as a problem that needs attention, like say it views breast cancer.

l  our.handicap isn't and won't be considered a priority because it only affects a minority of people

l  It's not a priority because we can keep people alive whether or not they are cured.

l  the movement to stop stem cell research, but I hope that is over now.

l  too many chiefs, not enough Indians.

l  The government wanting more and more research on rats, mice, etc.. The research needs to be on humans and there are a lot of willing humans.

l  religious, closed minded for stem cells

l  Spinal cord injury doesn't get enough attention as does cancer etc.

l  Most of the scientific research is made by private companies and they don't have enough interest in finding a cure.

l  The Government FDA people are afraid to work to get money for research

l  no backing from any governments

l  No balls.

l  politics and religion!!!!

l  funds directed into different areas of interest, And not enough focus on science as a whole Also to many small goups doing the same goal instead of combining resources and countries that could essentially provide the same service but cheaper and i am referring to trials. eg: one English pound to $2.5 dollars aust therefore stop thinking boarders but humans

l  religions

Question 5. What do you think of the following statement? "The fact that not one government in the world has made a cure for paralysis a national priority is holding back a cure."

72.58% Agree

8.06% Disagree

19.35 % Undecided

Question 6. Would you personally be willing to involve yourself in making a cure for paralysis a national priority in your country?

60.00% YES

5.00% NO

35.00% I’d be a willing supporter

Question 7. What activities do you think would be effective in making a cure a national priority in your country AND that you would personally involve yourself in? (write as many things as you want).

l  Kick the asses of: SCI Organisations FDA/EMA/NICE etc Egotistic scientific advisory board chairman Spinal Injuries Associations Clinicians who hide behind false hope Veteran SCIs who block the path with their negativity

l  $

l  Fundraising, awareness, more clinical trials, Gov't involvement

l  same approach as breast cancer is taking

l  Neutralize the opposition of my national SCI org. The rest will be easy.

l  we need a HUGE showing in WA DC, a rally where we could meet with politicians, be seen on tv, chain ourselves to the one of the national monuments

l  Lobbying the government to provide funds and resources to top medical scientists who are committed to finding a cure (such as Wise Young) Recruiting large numbers of researchers to work under these leading scientists. Educating both the public and the medical profession about the work that has been done so far and the progress that has been made. This could be done by public service advertising for the general public and through the traditional channels for the medical profession (symposia, articles in medical journals) as well as through "ambassadors" from the spinal injury community: people living with SCI and doctors/scientists working for a cure. We need some people to give a "face" to SCI, to remind the public and the medical profession every day that people are suffering and that a cure is possible given adequate funding, effort and commitment. I would involve myself in any and all activities to contribute to making a cure a national priority.

l  justadollarplease.org, scinetusa.org and. writing my local members in my community in Texas

l  We need to be seen.

l  Take the $14 million going to some jackass politicians severance package when he gets voted out and put that money towards research and testing.

l  prominent spokespeople, annual events

l  National telethon..... Percentage of road traffic fines go directly to funding clinical trials.

l  I think it will unfortunately take a high level public official (ie President, VP, etc.) to have a family member suffer a SCI.

l  keep on talking about it, everywhere and with everyone! people have to be informed to act!

l  giving (insert name of conservative billionaire here) an sci. this will be done in 2 years.

l  for the SCI community to unite and make it happen

l  Scientists involvement in politics and creating public awareness of science breakthroughs. Celebrity involvement with SCI issues. Physicians becoming aware of SCI research and their involvement in creating public awareness with patients and politicians.

l  I am a scientist working on this field.

l  Promoting awareness that sci can happen to anyone - Get sci patients on national channels and tell the audience true stories abt how injury happened, how difficult to live at the moment with all the problems (rather than miracle stories about someone walking which don’t do sci any favour as then everyone thinks that all is takes is hard work and determination - which is not true) - dedicating free off-work hours in promoting awareness - in pubs, public places etc and based on this open up very aggressively campaign to promote finding a cure.

l  meeting with leaders. Media exposure.

l  I don't think it’s a reasonable goal.

l  Those who are injured and family members need to get more organized and vocal.

l  I'd like to go to the next March on Washington, with my paraplegic son.

l  advocating for free rehab.

l  a sharing of information, lab data, facilities and a strong combined team effort across oceans borders and continents. many scientists are spending as much time and energy wooing their governments for money as they are researching.

l  I really don't know the answer to that, but I would do whatever I could to help!!

l  Just a dollar.org

l  awareness

l  Lobby Parliament and need national advertisement campaign to show the population the pain and distress spinal cord injuries cause patients and their families Show how a cure will save enormous amounts of money now spent on caring for patients

l  Spreading as much information as possible to make people aware of this important matter.

l  Spinal Cord Telethon

l  Suicide in public.(burning)

l  religion, big pharma, nih, fda, scrm, need to get their act together ASAP

l  advocate to all government and organized bodies

l  Walks and one unified website

Question 8. How much time could you personally give each week to making a cure paralysis a national priority?

27.27% 1 to 5 hours per week

9.09% 5 to 10 hours per week

3.64% 10 to 15 hours per week

5.45% 15 to 20 hours per week

1.82% 20 to 25 hours per week

3.64% 30+ hours per week

49.09% I don’t know but I’d be a willing supporter

Question 10. Where do you live? (Those who answered the question).

1 Australia

3 Canada

1 Denmark

2 France

1 Hong Kong

3 Italy

2 Japan

1 Unknown

1 Spain

1 Taiwan

4 UK

22 USA

Question 11. Email addresses

43 people left their contact details

Question 12. Anything else you want to say?

l  Hope this goes OK.

l  I have no idea what needs to be done. Tell me how I can help and I will do my best.

l  Cure the paralysis

l  i want out of this wheelchair asap

l  For the past 19 months I have been caring for my son (C5-6 injury) and have not become involved in any efforts to raise funds, raise awareness or do anything else to contribute to finding a cure. My son will continue to take up much of my time, but I want to help. Please get in touch by email.

l  Get involved and help bring a cure to people living with spinal cord injury!

l  Let's move ahead

l  Keep up the good work fella. Let's fire this up.

l  god bless all of us.

l  This is a great start, let’s hope it goes somewhere productive to SCI cure.

l  never lose hope

l  i don't really have much time to spare, but i can send cash when you get a plan together.

l  very good questionnaire Dennis remarks- curing in 5-10 years: i believe some level of recovery is possible. -about country action: i am in exile in NL, so difficult to act for France, and i feel i can have a better role on global matters. on time spent: hopefully i can increase the amount of time available for sci cure soon.

l  Thanks for putting so much work into this. I really hope this can translate into something meaningful. I’m willing to support as much as i can.

l  Thanks for your involvement.

l  I think that research should avoid tunnel vision. I have maintained a positive attitude to stem cell research, because I feel it has so much to offer. However, SCI treatment, I think, should not be seen solely as a stem cell issue.

l  keep the faith and let's work together to find a cure

l  Great poll, Dennis. Eager to see the results.

l  I said I would be a willing supporter-but I would be a doer if I knew what to do. I'm trying to win the lottery to donate to SCI research, but you know my chances at that, about as good as my being rich on my own.

l  On any given day I could answer most of these questions differently. Every time I think about the realization of a cure for paralysis I get the feeling that there is something missing from all the processes we try to get there. I just don't know what that missing element is.

l  its gonna take the whole paralysis community to make it possible

l  Thank You!!

l  My daughter was injured at 10 years of age.

l  Every single person can make something to achieve this goal. Let's do it!

l  i already place a raffle to raise money for Spinal Cord Society

l  good luck man hang in there lots of hope here. Hopefully the fda/nih will fund more research. politics and religion need to realize how backwards tehy are being. stem cells have so much potential. have your heard of the single blastomere technique? it derives one cell from a very young embryo. the embryo continues to grow regardless of the missing cell. check it out, advanced cell technology and robert lanza. seems like hsec could be a good answer but nih/fda/religion/courts are hindering progress. ...but i think we will see some amazing cures within this decade. best of luck!

l  yes help get me out of this chair and walking and using my hands before 2020

l  hope something happens soon

WE WIN!!!!!!!!!!!!!

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!

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.

///////////////////////////////////////////////////////////////////////////////////////////////////// WE WON!!!!!!!!!

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.

Time for a Manhattan/Apollo Project to cure paralysis

The short survey is at the end!

"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

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.
*************************

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. 

"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."
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".