12 July 2014

The Endparalysis Foundation

An exciting new cure foundation has been launched by a paralysed woman in the Netherlands. The Endparalysis Foundation has been set up by Corinne Jeanmaire, a dedicated cure advocate who was paralysed in a car accident in 2001. The Foundation’s primary goal is to accelerate the translation of biological therapies for chronic spinal cord injury by co-financing promising research projects. 100% of all funds raised by the foundation will go directly to research. The Foundation has a very strong scientific base with experts including Dr Mark Bacon, Scientific Director at the UK’s  International Spinal Research Trust, Professor Jerry Silver from Case Western Reserve University, USA and Professor Joost Verhaagen from the Netherlands Institute for Neuroscience. As well as fundraising, within the coming year foundation also aims to engage scientists and build a collaborative network in order to develop a flexible roadmap for accelerating combination therapies.

Please support this great new cure foundation by having a look at the website here and liking it on facebook here.


19 June 2014

BBC cure campaign continues

Just this month 250 members of the paralysis community sent emails to the BBC Trust to protest against the BBC programme Horizon's depiction of robots as an an answer to the problems of paralysis while completely failing to talk about the real advancements in regenerative medicine.

Well, the BBC Trust blew us off by saying that their job was not to deal with the editorial content of BBC programmes. This is despite that fact that the BBC Trust's job is to make sure that the public interest is served by the BBC. How was the public interest served by Horizon's poorly researched segment on paralysis cure? If anything this spreads misinformation to the public about the real barriers that those living with paralysis face.

Well, if the BBC Trust cannot help us, we decided to write to the producers and the presenter to see what they had to say about our complaints.

Below you'll find a copy of the email we sent and we'll let you know the answer if and when we get an answer.




04 June 2014

Email the BBC -- demand coverage of a real cure!

You may have heard of the Longitude Prize – a UK-based scientific committee offering a £10m prize for the solution of one of humanities greatest challenges. Six challenges have been shortlisted, one of which is paralysis.

A BBC documentary series called Horizon aired on 22 May to introduce the six challenges. Much to our dismay, the segment on paralysis focussed primarily on compensatory devices such as wearable robotic suit with almost no mention of regenerative medicine or cell-based therapies. Prize organisers have highlighted that complications due to paralysis reach further than just mobility and yet the ‘solution’ to paralysis proposed by Horizon focussed solely on robotic walking. 


Robotics are very popular at the moment and the media appear fixated with images of people ‘standing’ and ‘walking’. However, for a majority of those living with paralysis, compensatory devices offer little in the way of dealing with the real problems of paralysis. These wearable devices do not offer any recovery of function resulting in a continuous struggle with bladder, bowel and sexual dysfunction, neuropathic pain, poor circulation and a whole host of other paralysis-related health issues. To some in the paralysed community it feels as though funding of compensatory devices is money spent on keeping people paralysed. It’s also worth mentioning that wearable robotic suits do nothing to mitigate the huge financial burden that paralysed people place on governments.

We know that many in the community desire the return of different functions and not just walking. Regeneration of the spinal cord has the potential to improve many different functions while wearable suits will only ever deal with robotic walking. It is disheartening to see the media so fixated with these devices when they offer so little to paralysed people. Why is so little airtime being given to regenerative medicine? Regenerative medicine actually has the potential to radically transform people’s lives by addressing priorities as identified by the community themselves.

Thankfully, regenerative medicine IS focussing on paralysis and all the associated problems, but how come there was no mention of this approach on the show? There are numerous clinical trials which are testing emerging therapies involving cells, genes and enzymes and yet none of these were discussed or even mentioned by the BBC. These therapies don’t seek to compensate, they seek to cure and it’s time that there was fair representation of this approach in the media. 

Join us in asking the BBC to fairly represent the current state of regenerative medicine by using the simple online form below.

We're hoping that with enough emails going to Ms. Diane Doyle, Acting Chair of the BBC Trust (the BBC Trust is the guardian of the public interest at the BBC), some airtime will be dedicated to the many varied and exciting avenues which are currently being pursued in regenerative medicine, with regards to paralysis. Time has been given to compensatory devices and robotics and we'd now like our fair share of media coverage to redress this balance.

Compensatory devices = no return of function
Regenerative medicine = return of all function

Which do you want the media to be discussing?


Go below to send an email to the BBC and ask them to be honest about regenerative medicine for paralysis cure.


22 May 2014

Prevent secondary complications? Cure paralysis!

The other day I posted all the issues associated with paralysis that I have personally gone through. At that time I said that I thought I could be the "paralysis secondary complications" poster boy.

Well, I guess that if I was, the poster would look something like this.





Silly poster, but very very TRUE.

20 May 2014

I guess


I guess I'm back.

Not the most convincing statement I've ever made, but for now its a big of a commitment as I can make.

I've put a lot of energy into this blog over the years, especially into the campaigns, and I refuse to let it go to waste.

This blog was first started when I was in a rehab hospital after my second operation for an arachnoid cyst on my original point of injury. In total I was in the hospital for one year the first time.

It has continued since then through an operation for syringomyelia and the subsequent three months of rehab I went through, and then through to an almost four month hospital stay for a pressure sore. So I don't want to give up now.

The pressure sore added to my 24/7 neuropathic pain is what really got me. 

I've had so many secondary complications from paralysis that sometimes I feel like the "secondary complications poster boy". I guess this is one of the biggest reasons why I've continued writing and campaigning for paralysis cure; I know from my own experience that the happy life in a wheelchair is not possible for many living with paralysis. 

It's great to show all we can do even if we're paralysed, but the problem is that when we show the world how we're the same as everyone else, we are actually not telling the whole truth, and this big lie makes many believe that a cure is not urgent. Well, it is.

Concentrating on the super human feats of those living with paralysis actually hurts the self image of those who can't even do regular human feats due to secondary complications or the nature/level of their injury. Those of us who can't live normal happy lives are lead to believe that there is something wrong with us, not paralysis. 

A few years ago I wrote a blog post called "Tequila shots for cirrhosis research" and in this post there is a link to a CBC programme where people are talking exactly about what I'm saying here. Have a look and it might change your impression of those who the media chooses to focus on.

So if I want a cure for paralysis because I know a carefree life in the chair is not possible, I guess I'm going to have to keep fighting for cure.

"I guess" is all I can promise at this point in time, but if a bunch of other "I guesses" join together, we'll be that much closer to cure.

24 February 2014

The $5 "CureVideos" Challenge - Repost

I posted the below blog on 28 November after I was just hospitalised (feels like 100 years ago not three months ago) and I realised looking at it now that there is no link to the videos I want you to donate to. 

As much as I like to pretend that being hospitalised doesn't affect me too much, I guess it does, and thus the big omission. 

So, send my friends at Unite2FightParalysis a fiver for cure and show your support for their great educational package on paralysis cure.

Three easy steps to watch, educate, and donate.

Click here now to sign up, watch, and donate. It's as easy 1, 2, 3.

-------Original Post------

Many of you know the group Unite2FightParalysis (www.U2FP.org) and the wonderful yearly conference they put on called Working2Walk (www.working2walk.org).


There are many like myself who would love to attend and hear the exciting presentations made by scientists and activists in the fight to cure paralysis. Well, flying from Japan, booking a hotel, and all the costs associated with out country, or even out of city travel, doesn't fit into my budget.

But does U2FP leave me or you out just because we can't afford the time or money? No, they make sure that the presentation are available to ALL of us for free on the internet.

Click here to watch the videos. You'll be asked to log into your account and you'll get a password for the videos. If you don't have an account, you can log in through your facebook or twitter account, or create a new login. Whichever way you do it, you'll get a password which you can use. 

 Although they make it free to watch, it's not free for U2FP. I have learned that making the videos available to us for free costs them about $5000 for the videographer and then many many hours in volunteer time to get them ready for the final upload and editing. So I'd like to make all the video presentation viewers out there a simple, cheap challenge. From now on, every time I watch a 2013 video (the first time) I'm going to donate five bucks, and I want you to do the same. There is a donate link on all the videos which you can access after registering to view (registering doesn't oblige you to donate). You can support U2FP and their work to find a cure for spinal cord injury for as little as $5, and supporting cure is a lot better than any of the other things you can buy for a fiver. Of course, if you think that $5 at a time is a pain, please feel free just to make a larger, one off donation.  

Hope you take the challenge!

Click here now to take the challenge. It's as easy 1, 2, 3.

20 February 2014

They fixed the pressure sore, but what I really needed was a kick in the butt.

As many of you know, I've been in hospital. I've had/I had a pressure sore that didn't react to four months of out-patient treatment and it put me on my back in the hospital for the past three months. 

Well, three months and two operations later, it looks like I'll be back in the saddle again next week. I guess I could just leave it there and everyone would forgive me my not writing in my blog or doing any cure work.

How can you type on a computer if you're lying flat?
To tell the truth, it's really quite simple. You lose some speed and a little accuracy, but it's not so hard.
Well, even if you can type, who works while they're lying in the hospital with a giant hole in their butt?
Me. While I didn't do my cure work or write my blog, I did do my union work everyday. I wrote articles, did consultations, held strategy meetings, and did negotiations. I even did my union work on the days that I would have usually worked on my blog or other cure activities.
So I guess, through my own admission, I'm caught. 

Simply put, I got tired of being a cripple and decided that if I just concentrated on doing other stuff, I wouldn't be a cripple. I would stay in the hospital until my pressure sore healed and then I would leave victorious. Pressure sore healed. End of story.

I decided that I would be like normal people who leave the hospital - cured!

Well, as my pressure sore gets closer to being healed, the doctor has now let me know that I can sit up at 90 degrees in bed and then next week I can use my wheelchair.

"USE MY WHEELCHAIR!"

I guess hearing this phrase jolted me back into cure activism mode.

Does this sound crazy to you? 

It sounds crazy to me now, but not while I was hoping that I'd just walk out of here once my pressure sore healed.

So now that I've snapped back into reality, you can expect a lot more work out of me and even though I appreciate the three months you gave me to dream (and accomplish nothing), the next time this happens, kick me in the ass. 

Well, not in the ass because I can't feel it and you may bugger up the pressure sore. Kick me in the arm and tell me to get my ass back to work. Cure is waiting but we're the ones who have to make it happen.

I was going to say more, but I guess that I'll try to make sure that my first post-hibernation post doesn't offend anyone. I was going to talk about those who...opiate of the masses...happy rolling. Oh, well. That's for another day.

In the meantime, there are many things to do. Take a second to see some of the things you can help with and sign up.

Join the CureCaptains and get others involved.

Join our Canadian Cure SCI Group and help steer chronic cure in Canada.

Take the U2FP $5 video challenge educate yourself while supporting Unite2FightParalysis.

Like StemCells&AtomBombs on facebook and help popularlise the blog so others learn about paralysis cure.

Follow this site get regular updates about cure activity.

Just doing one of these things brings cure a little closer to millions.
So get off your ass and give it a click.

26 January 2014

Cure Girl activity results in support for Chronic spinal cord injury research in Italy

Cure Girl activity results in the decision of the regional administration of Lombardy in Italy to support chronic spinal cord injury research in 2014. From www.CureGirls.wordpress.com
The regional administration of Lombardy on Dec. 20th 2013 has approved the health plan for 2014 as proposed by the members of the administrations Dr. Mario Mantovani and Dr. Maria Cristina Cantù.

On page 115 of Annex 3 under “Special Programs” it has been specified that the intention of the administration is to allocate money to research for chronic spinal cord injury.

The Council’s decision was supported by the President of the Commission III Health and Social Welfare Dr. Fabio Rizzi, who had received and evaluated a proposal signed by Ms. Loredana Longo (Cure Girl) and Mr. Paolo Cipolla. The proposal detailed the situation of people living with chronic spinal cord injury and requested financial investment in research to find a CURE for this condition in line with the Council of Europe Recommendation n° 1560/2002.

“This is just the first step,” said Dr. Rizzi. “Now we have to identify specific projects.”
On behalf of people living with spinal cord injury that every day fight for a cure Ms. Longo and Mr. Cipolla want to thank the regional administration of Lombardy, Dr. Mario Mantovani, Dr. Maria Cristina Cantù, Dr. Fabio Rizzi  and his staff who have all shown to be extremely passionate and visionary to find a solution for this problem.

In Italy the Ministry of Health estimates the number of people living with paralysis caused by spinal cord injury is 80,000 with about 1.200-1.500 new cases per year. About 80% are between 10 and 40 years old. In the Lombardy region alone it is estimated that there are about 14,000 people living with spinal cord injury with an annual increase of approximately 250 new cases. This terrible condition is not only highly disabling for spinal cord injured people, but it also has a tremendous social and economic impact . In fact life expectancy for people with spinal cord injury is considerably reduced, especially for quadriplegics and also involves extremely high social costs.

I’m confident that this commitment of the Regional administration to support research will help to find effective therapies for the treatment of paralysis caused by chronic spinal cord injury.
Cure Girl Loredana


05 January 2014

The most challenging quiz you'll do in '14

I have a challenge for you in 2014. 
You can read on a little, or go directly to the quiz. 



a. What do all of these people have in common?
b. How many can you name? Name them.
c. Which one(s) are real people or depict real people?

And one more...













e. Who is she?

And before I leave you thinking that I've gone completely off my rocker, go here and take the 2014 Challenge!

Good luck and Happy New Year!

25 December 2013

Is CDRF listening? Maybe, just maybe, they are.

SCI won't be cured by hyped up language but by science and the active involvement of those living with the horrors of paralysis and their supporters.

In November, I wrote an email to Mr. Peter Wilderotter the CEO of the Christopher and Dana Reeve Foundation (CDRF) in regards to a hyped up fundraising email which claimed that CDRF was, “Successfully getting people out of wheelchairs right now. Today, it really is a reality.

Now, I don’t know about you, but when I hear statements like this it sounds like people are getting out of wheelchairs for good. A look through the research and what I find is that while it is helping people improve balance and even some ambulation; these same people are still using wheelchairs. Unless you try to be literal about it, this is not, “getting people out of wheelchairs,” in the way that most regular people would understand it.

I don’t like claims like this because they spread false hope especially amongst the newly injured and I told this to Mr. Wilderotter. I asked for an apology, but I think I got something much better. Looking at their next fundraising email, there was a fundamental difference in tone.

I’m heartened by the fact that maybe foundations do listen a little (after three years of campaigns aimed against this kind of behaviour).

This time, instead of making such broad sweeping statements that have no educational value whatsoever, Mr. Wilderotter listed three things that CDRF is working on which he thinks is important to both care and the future of cure. I would have liked some links in the email so people can see exactly what he’s talking about, but it’s a lot better than saying, “getting people out of wheelchairs right now,” without explaining the whole story.

To tell you the truth, I actually disagree with the importance of some of the three things Mr. Wilderotter raised, but guess what, I don’t mind disagreement. They don’t have to agree with me and I don’t have to agree with them. What I wrote to Mr. Wilderotter about was not disagreement over the statement, “Successfully getting people out of wheelchairs,” but that this statement is misleading, spreads false hope and miseducation, and makes people think that cure is much closer than it actually is. In the end, their message said, don’t worry about getting involved in cure, send us money and we’ll deal with it as we’re already getting people out of their chairs.

This is the wrong message. I hope CDRF does more in the future to involve those of us in chairs because I think it will help us all get closer to cure, but in the meantime, I’m happy that we MAY have sent CDRF a strong statement against wild comments that do nothing to bring us closer to cure.


Thank you Mr. Wilderotter (and I really do mean this).

PS. I spent some time this morning removing Bob's accusatory comments and the responses that others have made because they are pissed off with Bob's unending off topic comments about Dr. Wise Young.
From now on, false and/or off topic comments won't be allowed and this will stop the mean comments against Bob and his son (who doesn't have anything to do with this).

I understand that this is an emotional topic, but it gives no one, not even Bob, the right to make statements that they cannot back up.