Italian IV National Day for Persons with spinal cord injuries

The will of the people inexplicably ignored

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.

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.

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

Welcome to the Spanish cure and Fenexy

~by Carles Alcolea~

From our youngest days we are told at school that the illness is cured by gentlemen in white coats with test tubes, who are called scientists. We have always imagined them as mad scientists with wild hair, inside a gigantic building full of laboratories with infinite resources doing experiments which only they can understand.

Nothing could be further from the truth. How does science actually work? How do we discover the cure for diseases?

The harsh reality is that scientists are ordinary people, made of flesh and blood, with their families, their mortgages, and their own problems. They are usually people who have decided to commit themselves to research as the result of a personal passion, and quite often do not earn money with it; they live on their salaries as a teachers or from scholarship to scholarship.

Even then, some of the time that they could be dedicating to research to make more progress, is wasted filling in applications, applying for scholarships, seeking partners, trying to reduce costs, etc.

This is why things move so slowly.
What if the gap between science and society wasn’t so big?

After all, science is used to fix problems in society, why not ease the work on the ones who research how to cure us? Tomorrow you might need a therapy that has not been discovered yet.

The field of the spinal cord injuries repair is progressing quickly due to the latest discoveries. We have already broken the barrier that seemed unbreakable: spinal cord injuries are now curable.

But the science behind a cure for spinal cord injuries needs many things: money, incentives to attract new minds, human and material resources, etc.

The scientists need to meet frequently and talk about their progress to generate new ideas, to compare results, and to collaborate with one another. They need everyone’s support.

That is why Fenexy exists.
Founded: November 2010.

Would you like to do something to help in the meantime?

See Fenexy’s website at www.fenexy.org.
See Fenexy’s Facebook page at www.facebook.com/Fenexy.
At Fenexy there are many things you can help with, administration, advertisement, design, translation, etc.; there is a lot of work to be done.
Contact us at info@fenexy.org

PS. Great progress. This is the first post translated from another language into English. Thank you Pierre. All mistakes with the English are mine as I did the editing.

Seisan Kanri from Japan to help cure SCI

I know that these days people's eyes are fixed on the catastrophic earthquake that hit Japan, but today instead of focusing on the problems facing Japan, I would like to talk about the positive things that are coming out of Japan to cure spinal cord injury (SCI).

Last year there were announcements of some interesting breakthroughs on the research front. First there was a report from Nara Institute of Science and Technology showing success in animal models of SCI using neural stem cells. Also a very promising report from Keio University and their use of iPS cells that got monkeys walking. 

Recently I have been reading some information about Dr. Dezawa Mari at Tohoku University (which is in the area hit by the earthquake) and her work reprogramming neurons from bone marrow cells which could possibly be used to treat lower spinal cord injuries. And just up the road from me at Osaka Medical University, I hear noises about possible clinical trials using OE cells (OEG cells) to cure spinal cord injury.

But today, these are not the things that I want to focus on even though they are very relevant to curing SCI.

I think that sometimes people in the SCI community, including myself, are a little bit skeptical about research. We know that we need research to continue, but research without translational work (getting the science to people with SCI through clinical trials) is empty.

I work with many different people in the SCI community and we often talk about this problem with the translational work and how to solve it. We also talk about many different world organizations who raise a lot of money telling people that they want to cure SCI, but we don't see any progress towards clinical trials from these groups. Again, how do we regular SCI people get our message across to these groups.

The other day I received an email from one of my colleagues in the fight for a cure, and I think that since he knows my union activities wrote,
"We have nothing to bargain with here, we cannot withhold our scis as labour can be withheld."

This got me thinking about the characters that you see at the left. In romanized Japanese it is pronounced seisan kanri which translated into English means production control and it's how Japanese trade unions dealt with a very terrible situation at war's end.

See, Japan has a history of pulling itself out of terrible circumstances. I'm sure Japan will recover from this earthquake as it has from others. The damage done in this earthquake is being compared to the damage caused by World War II, of course on a smaller scale, and one of the things that pulled Japan out of the horror at the end of the war were trade unions.

Unions that were once crushed under the weight of a militaristic Japanese government prior to the war, came out of nowhere once this regime was defeated and started organizing. But they faced the very problem my friend's email stated. How do you go on strike when the factory or workplace is not even open because in many industries there was a strike by capital which refused to even open up workplaces? Or when the employer uses threats of closure to ward off strikes in a situation where not many people even had a job? See, they didn't really have anything to bargain with either.

In these situations Japanese workers used a new kind of strike called Seisan Kanri or production control. They didn't simply occupy their factories like the sitdowners did in America ten years before, they kicked out the managers and ran it themselves. Their bargaining power came from this, "Do you want your factory and the profits back? Then meet our demands."

And that's what about 200,000 Japanese workers did between December 1945 and autumn 1946 when it was outlawed by the supreme court (undoubtedly because it worked so well). When this tactic was successful the workers didn't just go back to the way things were. Eighty percent of the collective agreements won in these struggles (and in more traditional strikes) included clauses granting equal participation from labour on management councils and union veto rights over hiring and firing.

Now, we in the SCI community need to figure out how to apply this very important lesson in our struggle. How we can move from the sidelines of the battle for a cure into the mainstream organizations to make sure they are working for the cure. Not go cap in hand, but go in with more voices and more strength. To control the 'production' of the cure.

If workers in a war ravaged country with memories of jail for union activity fresh in their minds could do this, then we can, too. This is another contribution from Japan in winning a cure for spinal cord injury.

You can find more information about Seisan Kanri here.

Noela Vallis on my mind - Interview Spinal Cord Society New Zealand Inc.

“What I’d like to see is a future where if you break your neck or your back, you’re treated for a few weeks and then you’re back to work. Just like if you had broken an arm or a leg.” ~ Noela Vallis ~

Logo of the Spinal Cord Society New Zealand

I can’t get Noela Vallis out of my mind, and I think she challenged me to think about ways to achieve a cure that I had never thought of before.

What do you do if you are trying to do something that has never been done before and you’re not willing to go beg the government to do something you know that they won’t fund anyways? I’ll tell you what Noela Vallis did, but before I do, let me say just a few words about trying to deal with other people working on a ‘cure’.

I’ve sent out a lot of emails to different researchers and organizations dealing with, or supposedly dealing with, curing spinal cord injuries, and with the exception of a few (which you'll also be introduced to in the near future), I never hear back.

So I was so shocked when I sent an email off to the Spinal Cord Society of New Zealand asking to interview their Chair, Noela Vallis and got a response within two hours saying that my email had been forwarded to her. I was even more surprised when I got an email back from her telling me that she’d love to talk. “Give me your number,” she said. I knew that I had met a very different person.

Now before I go on, let me tell you who she is. She is a seventy year old woman (told me this right off the bat) who set up an organization twenty five years ago to beat paralysis after her husband was paralyzed in a jet boat race accident. Her organization has just won approval for clinical trials in New Zealand using OE cells (OEC = Olfactory Ensheathing Cells also known as OEG cells = Olfactory Ensheathing Glia) which are harvested from a patient’s nose and implanted into the damaged spinal cord to cure spinal cord injury.

You can find more about their trials by visiting their website or watching an interview with all the important players.

“If they could put a man on the moon,” she started, and I knew I had found someone who I would enjoy talking to for an hour. I wish I could have talked to her for ten hours because it would have been ten hours of laughter and learning.

And with her ‘man on the moon’ theory she started fighting for a cure when no one believed it was even possible and, “the last five or six years have shown that it is clearly possible to cure SCI.”

How did she do it? Along with travelling around the country speaking to different groups, she says, “I work four or five hours a day and then I just sit in my kitchen from 7 to 11PM and raise the money and talk to people.” Even though she’s very modest about it all, you know that she is the one who has made this all possible and without one cent from government. “If I had tried to do it through the government, there would have been too much red tape.”

For the first ten years she raised money and sent it on to research being done in America, and then one day she was told that even if a cure was found in America, “you can’t all come over here to get cured.” So she went outside, kicked the car, and said, “what in the hell am I going to do?”

And then in a very practical way that suits her personality, she went about organizing a cure in New Zealand.

She needed a researcher, so she found one, raised the $290,000, and shipped her off to Alabama in July 1999 for two years to learn about a cure for spinal cord injury. When the researcher came back, Ms Vallis realized that there was no sense having a researcher but no place to do the research, so she built a research laboratory. Started building it in February 2002 and moved in May 2003. Cost her $128,000 dollars and then she raised another $1.5 million to equip it. 

She makes it sound so easy, and listening to her, you actually believe that it was, but I can imagine that it wasn’t. She called the Rotary clubs to help and women’s institutes and got a lot of help from the gaming trust which funds sports, education, and charities with their poker machines.

“When we first started they said that we’d have to do rat studies for five years. Well, they’ve been doing rat studies for forty years and the only thing that they've accomplished is to kill a lot of rats.” She also told me about where they could stick their rats, but I won’t tell you where. Her lab has done no rat studies. She told me that her lab was set up to do one thing – get ready for clinical trials to cure spinal cord injuries.

Knowing that both OEC and bone marrow cells have been proven safe in other studies, they have spent their time not killing rats, but purifying and improving their techniques for expanding the cells after they are taken from the subjects.

After dealing with the multi-regions ethics committee and having her protocol for the clinical trials blocked for four years and eight months, Mrs. Vallis fought back. She gathered a group of twelve politicians, and I can imagine that she used her charm on them. “If I don’t get approval, I’ll make it all public. All the blocking of our trials to cure people with spinal cord injury.” Two months later she got the approval and in June the trials should proceed.

“We know it won’t be a miracle,” she said, “but trials must start at some point. This is not spreading false hope, but testing the science is part of curing spinal cord injury.”

She has shown me that there is more than one way to skin a cat (or a rat).

Are you interested in helping to keep these trials running? 

Please donate to the Spinal Cord Society New Zealand.

There's no cool way to suffer a spinal cord injury...but this is crazy!

You'll forgive me one tirade.

I've never had one before on this blog, but right now I'm ready for one. I just came back from the hospital to see the results of a recent MRI. This MRI was taken to establish whether or not my 'spinal-cord injury' came from what is called an AVM (Arteriovenous Malformation). This is when the arteries and the veins in the spine (or brain) get all tangled up causing a bleed. This bleed later compresses the spine causing paralysis. It's not very common, but it does happen.

Apparently, I don't have an AVM according to my doctor. This is good news as it means I don't have a bomb ticking in my body that could blow again, maybe somewhere higher on my spinal cord causing quadraplegia/tetrapelgia. But it's also bad news as it means that no one really knows what happened.

I know it's crazy to even think about it, but I feel that I have a less cool spinal cord injury than everyone else.

Imagine me at my spinal cord injury (SCI) survivors' meeting (which if you know me, you know I don't attend).

SCI Counselor: "Now group, today I would like you all to share the horror that caused this to you."
SCI 1: "This happened to me playing rugby."
SCI 2: "This happened to me in an F1 race."
SCI 3: "Well, I don't like to brag about it, but me and my friends had a wild drinking party and I injured myself while drunk trying to jump into the river."
Dennis: "Just bad luck!"
Counselor: "Dennis, it's bad luck for everyone, please share with the group."
Dennis: "Are you stupid? I just did! It's bad luck for everyone, of course I know this, I'm not a freeking idiot. Mine was really just bad luck. No one knows what happened to me."
Of course I'm now threatened with being kicked out of group for punching the counselor in the face.

Cut to rolling home after work and meeting the old ladies in the street.
My wife always tell me that I don't have to tell them everything because they're nosy. Me on the other hand like the old ladies and because they were always nice to me, always had a good morning for me, feel that I owe them some explanation. These old women (actually not only old ladies) saw me playing in the street with the neighbour kids for years and now they see me in a wheelchair. Of course they're going to ask.

Guy at the train station: "What in the hell happened to you? Sporting accident?" As he imagines me running down the field trying to score a touch down when I was tackled from behind.
Dennis: "I had some bleeding from somewhere in my back." And leave him scratching his head.

Old lady 1: "What happened to you? You were always so happy and healthy. Car accident?" As she imagines me racing down the highway in my convertible, scarf fluttering in the breeze, before I was in a car wreck.
Dennis: "No, I don't even have a car and I don't like driving. It's too dangerous. I had some bleeding from somewhere in in my back." And leave her scratching her head.

If I were in America, people might even imagine me as Dennis the gangster, paralyzed by a gun shot in a drug deal gone bad. I'd have on my bandanna and my pants hanging low exposing my bum. They'd be wrong, too. Thank God I live in a place with almost no gun violence.

Now back at group therapy. They let me back in after we realized the counselor didn't suffer a broken nose, just some bleeding. (Where have I heard this before).

Counselor: "Today group, I'd like to discuss your cool new life in the chair.".
SCI 1: "Well, since I can't play rugby anymore, I've taken up basketball."
SCI 2: "I'm now into wheelchair racing and I will be number one in the world."
SCI 3: "I've now stopped drinking and have am studying to become a counselor so I can help others get used to living in the chair."
Counselor: "Dennis, tell us how you are adjusting."
Dennis: For the first time I'm happy because I can now tell the group how unity will bring us a cure. How animal studies have shown us very clearly that it is possible to regenerate the spinal cord. "Me, I'm working with others from all around the world, to win a cure for SCI."
Counselor: "Now, Dennis, don't be crazy. There is no cure for SCI. You must accept the fact of your life in the chair. Why not try fishing, or mountain wheeling, or..."
Dennis: "I'm sorry. I'm happy for everyone because they've found their niche. My thing is now getting out of the chair."
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."
Dennis: "I'm leaving."
Counselor: "Because you can't accept the truth."
Dennis: "No. Because I don't want to punch you in the face again. Too busy to go to prison for hitting an idiot."

Now, up until yesterday, this was the scenario. But now that I'm told that no one knows what happened to me, that I don't even have a good old fashioned SCI scar, that i don't even have what I thought I had, I don't know. I first have to figure out if these new cell therapies will even help the guy in the chair that no one knows what happened to him.

But I'll tell you this. I'll find out!
And because I have made so many wonderful friends from all over the world who a cure definitely will help, my hat is still in the ring! Actually, I'm pretty sure it will help me, too, but I got to do a little research.

Back to studying, and fighting!

P.S. After this little tirade, I feel much better. Thank you for listening.

Tequila shots for cirrhosis research

View-The Fifth Estate "Hitching a Ride" 6 Jan. 1987

Eric Malling interview with Rick Hansen - Thunder Bay, Ontario as he was about to head into the Canadian prairies in the dead of winter before returning to British Columbia and completing his 'Man in Motion' world tour to raise funds for spinal cord injury research.

Malling also interviewed 'others' for this programme.

Peter Cavanagh who was disabled by polio and wrote the article, Stunt detracts from real issue in regards to the 'Man in Motion' tour.

Norman Kunc, who suffers from Cerebral Palsy and is the author of "Ready, Willing, and Disabled".

Judith Snow who has Muscular Dystrophy and works with an organization supporting the disabled.

Alan Arlette from the Canadian Centre for Philanthropy.

The 'others' raised some very interesting questions about how society deals with curing and caring for disease. As Hansen begins his twenty fith anniversary 'Man in Motion - Part II' world tour, maybe we all need to discuss why world governments, who control massive financial resources, rely on private fundraising, or super heroes, to cure and care for its citizens.


Peter Cavanagh on Brian Mulroney giving Hansen a cheque for one million dollars.

This is not the way you deal with fundamental social problems…you do not deal with it through stunts.

If that’s the way we solved problems, we move money around on the basis of ‘who’s wheeling through town’ and catches our attention next. Give him a million bucks.

I mean Brian Mulroney might have just taken the money in a lump, put in on his lap and watch it wheel out of town, counting votes as he did.

That wasn’t a serious response by a federal government charged with dealing with the affairs of Canadians, was it?

Judith Snow on Mulroney's million.

Snow: I worked for the federal government for a short period of time. I think that, probably, what’s happening is, is that someone is making political hay, which is not what Rick Hansen needs. He doesn’t need more political hay.
Malling: But that’s terribly cynical. I mean surely, politicians aren’t going to ride on the back of a wheelchair?

Snow: Why not?

Norman Kunc on the need for research funding.

Research becomes a charity, a privilege. People say, “we’re going to do you a favour. Here’s a hundred dollars, here’s five hundred dollars, so you can do research”. 

Research should not be a privilege but an ongoing right with funds being supported by the community.

You don’t see the Canadian Armed Forces travelling across Canada getting handouts so that they can buy new uniforms.

Alan Arlette being questioned by Malling in regards to government cuts to research funding

Arlette: We need a steady flow of government funds into medical research…that’s fundamental to a healthy society

Malling: What do you make of Governments in some cases cutting back on research money with one hand, but being happy to get in front of the cameras to give it to Rick Hansen?

Arlette: I think that it’s hypocritical and it’s exploitive and it harmful in the long run to what we need in this country.

Peter Cavanagh on fundraising.

The next time a society, be it the colitis and ileitis society, wants to raise money from you or from me or from anybody else, they’ll have to figure out some sort of stunt to get the money and maybe we’ll become a bit hardened and we’ll say, "I want to be impressed a bit more, I mean, the last guy wheelchaired across the country," so if you’re going to come up with a stunt to raise money, you better come up with a more extravagant, more spectacular stunt.

I suppose if you were the Kidney Foundation and you were planning ahead, you’d hope that some super human athlete would have some sort of kidney problem and maybe they could do a stunt and you could raise money.

Norman Kunc on competing diseases groups raising funds

So what happens is people with cerebral palsy want to do their fundraising and they're not as glamorous as Rick Hansen? Does that mean the public give more money to Rick Hansen than cerebral palsy? Then the whole medical research funding is turned into a beauty contest.

Of course, looking at all the comments in this interview with 2011 eyes there were some mistaken comments. Some in the interview said that the world would forget Hansen. That once the cameras stopped flashing no one would care about the rights of spinal cord injured people. They were wrong. Rick Hansen has gone a long way in raising awareness and money for spinal cord research, but twenty five years later, there is no cure for spinal cord injury.

I guess after transcribing these opinions, I don't have much more to say, except for one thing.

In the world of curing spinal cord injury there are a lot of new efforts taking place in regards to basic research and clinical trials. While everyone competes against each other for donations and private companies are at the mercy of their investors, will we ever get to the cure that is surely out there while having to compete for charity against much bigger and much better organized 'disease' groups?

Maybe it's time for a rethink.

Italians and their scaffolding

The ceiling of the Sistine Chapel

First there was Michelangelo and his specially designed scaffolding which he used while painting the Sistine Chapel.


Then there was my father, laying on his back on the scaffolding with a cigarette jutting out his mouth, putting swirls on people's ceilings. I remembered seeing a picture of Michelangelo on his scaffolding when I was a kid and I wondered if my father and Michelangelo were related (I used to think all Italians were related).


If you've ever seen fancy design work on people's ceilings, you'll understand what plasterers and artists have in common; a beautiful mixture of art and construction. I grew up around a lot of Italian tradesmen when I was a kid. Plasterers, bricklayers, painters (one guy's name was actually Michelangelo), carpenters, and you can really see the art of Italy in their work.


Now, before you start wondering if I've given up on a cure for spinal cord injury and decided to comment on art or Canadian ethno-cultural history, let me tell you about two more Italians and their scaffolding.


Their names are Angelo Vescovi and Fabrizio Gelain. They aren't artists per se, they are researchers at the CNTE at Niguarda Ca'Granda Hospital, University of Milan-Bicocca and IRCCS Casa Sollievo Della Sofferenze, but we've all heard of the "art of healing".


Like always, I'll give you the link to the deep science of it all, but I would like to look at a few comments made by these researchers.


Gelain states, "we managed, for the first time, to obtain a consistent regeneration of the nervous tissue in chronicized injuries at the spinal cord by using a nanostructured composite scaffold with no cells in it." By this 'no cells' he is talking about things like stem cells or other blood derived cells that are also being worked on to regenerate the damaged spinal cord.


He then goes on to explain that, "By themselves, nanostructured scaffolds probably will not solve the problem of regenerating chronic and acute spinal cord injury" says Gelain. "However, they will become a necessary component of an effective multi-disciplinary therapy in the near future."


This 'multi-disciplinary therapy' comment is what most interests me. My concern is that, even though I really respect scientists and their work, no one seems to be coordinating this 'multi-disciplinary' effort. This is we have to get real people involved in a cure for spinal cord injury. Left only to scientists, they may miss things, or be so enthralled in their own work, that they forget that 'multi-disciplinary' efforts are best.

More government coordination of different approaches is what I feel is missing from the whole effort to cure spinal cord injury, and when I say government, you know that I mean your involvement, because you are the only ones that can make governments act.

If President Roosevelt could plan an atomic bomb in five years, and President Kennedy could lay down a challenge to put a man on the moon in ten years, then what we need now is a leader to demand that all these therapies are brought together to cure spinal cord injury now.

I would hate to see Vescovi and Gelain's very hopeful scaffolding technique lost to the world of Italian art.