21 October 2014

Give SCI BC a new slogan to replace, "It's not about cure. It's about quality of life."

Recently, I've been getting a fair number of emails and comments from of all of you to help SCI BC think about a slogan they used on a poster (you can see it circled in red to your left) to replace, "It's not about cure. It's about quality of life." I was able to have a good talk with the CEO of this organisation and he realises that this slogan needs replacing as it could give the idea that SCI BC isn't in support of regenerative therapies.

Of course SCI BC isn't obligated to use our ideas for a new slogan, but I want to let them know that people aren't just interested in complaining, but interested in working together to make sure that problems are rectified not only talked about.

So I'm putting the list of ideas that I received below, unedited except I haven't included any that disparage the importance of care, quality of life, or cure. Now, I'd like to know your top ten from the list.

Hope you spend a few minutes to vote. The list is below and you can pick your top 10 here.

18 October 2014

Want to know what it's like to live with a spinal cord injury?

If you don't have a spinal cord injury or other form of paralysis, you can't even imagine what it's like.

You see the loss of hands, arms, and feet, but that's just the tip of the iceberg.

Well, now you can hear first hand from those living with paralysis what it's like to live in their bodies.

This short, wonderfully produced video will help you understand paralysis in a way you never have.

Thanks to Minnesota Matthew for this very informative video.

Go to www.gusu2cure.org to watch.

10 October 2014

"It's not about cure. It's about quality of life." PART II

First of all I would like to thank Mr. McBride, executive director of Spinal Cord Injury British Columbia (SCI BC) for his thoughtful and speedy response to my email regarding his organisation's commitment to a cure for SCI.

The concern was raised after one of their posters explaining many of the challenges of paralysis used the slogan, "It's not about cure. It's about quality of life." sparked some controversy.

Of course we didn't get a response saying that SCI BC would now focus solely on cure, and that was never expected. SCI BC plays an important role in the SCI community by improving accessibility to housing, jobs, and the community as a whole and as a divergent membership organisation reflects the opinions of many who may or may not be cure oriented.

What we wanted to make sure was that they were; one, not anti cure; two, not flobbing cure off as some unrealistic goal; and three, they were going to continue putting a message out to the community which could easily be misconstrued as lowering the importance of cure. I think we got a Good response on all three points.

Are they anti-cure? No. In Mr. McBride's own words, "we did not intend to diminish the long-term priority of someday finding a cure for SCI. As a cellular neurobiologist who spent many years researching neuroprotection and neural repair after SCI, I am a strong believer in ongoing investment into the discovery science that is necessary for future treatment options and in the subsequent translational research that will be necessary to move those discoveries into clinical practice."

Do they think cure is unnecessary? No.
"We absolutely acknowledge that having access to a cure would increase the potential for people with SCI to achieve the quality of life they desire by reducing the barriers and challenges they face."

How about the continued use of this slogan. Again, I'm happy with the response. "Elaborating on the statement in question, we will be changing it so that is not as readily interpreted as negating cure as a priority. It was never our intention to imply this."

There are some areas where I think a more cure positive approach could be taken. I think like many SCI community organisations they understand our community's desire for cure but also don't want to spread false hope or have priest fail to concentrate on the here and now while they wait for cure. I personally do not think that the gulf between quality of life now so we can get to cure in the future needs to be so vast. I think the two are complimentary.

Since SCI BC is looking to change their slogan, Maybe we could give some of our own ideas which also reflects their organisations goals to achieve both quality of life and cure.

Have a suggestion, please leave it in the comment box below or send an email to StemCells.and.AtomBombs@gmail.com.

PS. As always, I'm having a lot of pain which makes it difficult to get motivated to write, but as always, when I do write and get some movement on a project, I feel a while lot better. I'll have to remember this.

Response from Mr. McBride

Hello Denis,
Thank you for taking the time to connect with me about the poster in question. We here at SCI BC are aware of the reaction it has generated – both positive and negative. In fact, it probably wins the prize for the highest volume of engagement we have had from any post. I am happy to clarify our position on the issue of cure, and although I am aware that my response will be published on your blog, I will nevertheless be frank and honest in my reply.

I will also confirm that I am very aware of your blog and the global movement you have so successfully created. I have watched with particular interest your communications with the Rick Hansen Foundation and Institute over the recent past. The voice of one can be strong but the voice of many can be a powerful thing.

With specific respect to the poster we posted recently, I will admit that we were somewhat hesitant about the phrase in question - "It's not about a cure. It's about quality of life." Let me interject now that we did not intend to diminish the long-term priority of someday finding a cure for SCI. As a cellular neurobiologist who spent many years researching neuroprotection and neural repair after SCI, I am a strong believer in ongoing investment into the discovery science that is necessary for future treatment options and in the subsequent translational research that will be necessary to move those discoveries into clinical practice. However, having been involved with SCI research for over 22 years, I am aware of the (frustratingly) slow pace of discovery and it is why I am passionate about resetting the balance of investment in both the types of research that are being conducted and between research and the invaluable community services that will allow people with SCI to maximize their potential and quality of life today.

Getting back to the poster, it was actually created for a very specific audience at a non-disability-related event we were featured at. We created the poster to highlight many of the everyday challenges faced by people with SCI, which you affirm in your email and of which the general public is mostly ignorant. We used the wording about cure to help differentiate what SCI BC does from other SCI-related organizations with which we share a backyard. Which is to say, we stated it that way not to diminish the importance of finding a cure, but rather to highlight that there is a lot to be done today that can have an immediate positive impact and what SCI BC does to try and foster that.

We were concerned the wording we chose about the cure might be misinterpreted but we put it out there to see what kind of response it might yield. This wasn’t meant as a deliberate provocation. We just thought we would test it and see what the response was before we changed the wording, which we will be doing soon.

As mentioned above, we have been pleasantly surprised by the volume of response we have had to the poster. We welcome all forms of constructive feedback and think engagement of this kind is healthy. We often don’t hear about positive reactions to what we post, but we have had an overwhelmingly positive response to the poster. That said, we have also received a lot of negative responses to the cure statement, and we totally understand why. It is good to have it validated.

Elaborating on the statement in question, we will be changing it so that is not as readily interpreted as negating cure as a priority. It was never our intention to imply this. However, we think it is important to reflect the fact that people with SCI have broad ranges of priorities and that not all feel they need to be cured to have a quality of life – that one doesn’t need to be cured to be whole. We know this based on what so many of our members tell us and from some very interesting research that affirms it.

That said, we absolutely acknowledge that having access to a cure would increase the potential for people with SCI to achieve the quality of life they desire by reducing the barriers and challenges they face. However, as this may be a very long-term proposition, we need to respond to the those who are not engaging in their communities or working to maximize their potentials because they are waiting for a cure they believe will be around the corner.

Through our 57 years of service delivery and the reports we receive from the health practitioners we engage with, we know that too many people with SCI are not participating in rehab or community services because they think these things are unnecessary as a cure is what they really need to move forward and that it must be coming soon. Unfortunately, researchers and mainstream media alike have perpetuated the false hope of an imminent cure. Through my research background and the connections with the research community that I maintain, I think it is clear that there aren’t any sure-fire candidates for a cure coming anytime soon. One never knows, of course, but I think the probability is low. This is why I advocate for ongoing basic science to better understand the complexity of spinal cord injury and why I advocate for research into what might not be considered cure-based (such as rehab strategies, mitigating or preventing secondary complications, and assistive technologies, all of which can yield meaningful, near-term benefits for people with SCI). It is also why I advocate for greater investment in community services.

I know I may be opening myself up to a mix of feedback, but more on my perspectives on resetting the balances of research and community service can be found in my blog posts and in SCI BC’s The Spin magazine. Here are a couple of links to these entries:

·         Investing research vs Community: http://sci-bc.ca/sci-research/investing-research-vs-community/

·         Snotty Spine: A good investment? http://sci-bc.ca/news/snotty-spine-good-investment/

·         New research restores voluntary movement after complete SCI: http://sci-bc.ca/sci-research/new-research-restores-voluntary-movement-after-complete-sci/

·         The Spin Magazine: http://sci-bc.ca/stories/spin-magazine/

I know this is a rather verbose response, but I hope you and the Stem Cells and Atom Bombs community will appreciate that SCI BC does indeed think find a cure for SCI is a priority. I also hope that, as you mentioned in your email, it is recognized that there are many challenges faced by people with SCI that we need to address today and that SCI BC has a focus on many of them, and that it would be a great disservice to people with SCI if all of the money was diverted to efforts towards a cure. Too many would suffer unnecessarily and/or miss out on too much waiting for it to be realised.

We feel very strongly that we must reflect the views of our members who tell us that they know a cure may not be available in their lifetime and that they want us to promote and facilitate changes that will enhance their lives today, such as greater access to accessible housing, accessible transportation, funding to support all aspects of daily living, information on and access to accessible travel and recreation, reduced secondary health complications, and equal opportunities to participate in our communities. Through our Peer Support and Information Services, they appreciate knowing what is possible and how to try and achieve it.

With limited resources, time and expertise, we must achieve a balance between perusing the ultimate,  long-term goal of finding a cure for SCI with what is needed in the immediate and near-term to maximize ability and quality of life. This is not an easy equation and there will be endless debate about where that balance should lie. This, however, is healthy debate as it increases awareness and understanding that will benefit all participants in it.

Thank you again for taking the time to connect with me about the discussion we’ve generated through our poster. As we knew we would likely be doing when we posted it, we will be adjusting the wording of the contentious statement in the near future. I appreciate that what we change it to may not satisfy everyone, but I hope that you and those who follow and contribute to your blog know that SCI BC knows that finding a cure for SCI is a priority for almost everyone, but that where it fits on peoples priority list varies greatly.

I will be more than happy to continue the dialogue.

Sincerely,

chris
Chris McBride, PhD

Executive Director

Spinal Cord Injury BC 
780 SW Marine Drive, Vancouver, BC   V6P 5Y7  | www.sci-bc.ca | twitter: @sci_bc | Facebook:  SpinalCordInjuryBC | YouTube:

07 October 2014

What does, "It's not about a cure. It's about quality of life." mean?

A recent poster put out by SCI BC (Spinal Cord Injury British Columbia) has caused a bit of a stir. While the poster mentions a lot of important facts about spinal cord injury, including letting people know that SCI is more than just 'not walking', it ends with the line which causes the controversy.

"It's not about a cure. It's about quality of life."

I think that many of us in the SCI community have taken this to mean that a cure is not necessary as walking is not the problem. Therefore if you fix the secondary issues, you have created a Good quality of life and forget the walking part.

Many of us believe that this is kind of logic is crazy. We all agree that secondary complications do reduce quality of life ALONG with not walking AND/OR not being able to use your arms. The difference is that we think cure IS quality of life. Cure paralysis and you cure the many problem that go along with it.

But before causing an uproar, it would be best to go to the source and ask what this line from the poster actually means. So I've written to Executive Director Chris McBride and Chairperson Edward Milligan and hope to published their response.
____________________________

Dear Messrs McBride and Milligan,

My name is Dennis Tesolat, a Canadian living in Japan and a paraplegic. I write a blog at www.StemCellsandAtomBombs.org about paralysis cure. The blog is aimed at both educating people about paralysis and cure as well as getting the community involved by giving people a voice in how government, foundations, and other organisations deal with the question of cure.

Lately I haven't put the work that I should into this project as I've also been dealing with many of the secondary complications you mentioned in your recent poster about SCI. I was happy to see your organisation educating people about these issues. It's very true that when people see those of us with SCI, paraplegics especially, that they think it's all about walking, so it was good to see the poster list off the other forms of torture we live with.

I also feel that I should let you know that the poster has created a bit of a stir among cure activists. The bottom part carries the line, "It's not about a cure. It's about quality of life." Many have taken this to mean that SCI BC doesn't believe that a cure is necessary, or at least not a priority.

Therefore I would like to ask you to clarify the meaning of this line and SCI BC's position regarding cure. I personally would like to hear that your organisation's position is that cure IS quality of life and that we have misread your intention, but of course, SCI BC will have its own policy.

I look forward to receiving and publicising your response.

Respectfully,
Dennis Tesolat

15 August 2014

Sign to support the "Spinal Cord Regeneration Initiative Project"

From our good friends in Minnesota! (http://mission2adventure.blogspot.jp/2014/08/poster-email-for-spinal-cord.html?view=classic)

PLEASE SIGN & SHARE THIS PETITION:

Tell the US President and Congress to support a 

"SPINAL CORD REGENERATION INITIATIVE PROJECT". 


It's easy, all you have to do is click this link: http://wh.gov/leJXF
type your name and email address, then verify your email, it takes about one minute.  Non US residents can also sign.

This project will help over 5.5 million US citizens who live with spinal diseases such as Spinal Cord Injuries, MS, ALS, and many other life altering spinal diseases.  This petition promotes medical research for functional outcomes and enhancing access to physical therapy and fitness for people living with Spinal Disorders.  

100,000 signatures are needed by August 27th, 2014 for an official response from the White House, so please share now and SPREAD THE WORD!

Check it out on:
Facebook: Spinal Regeneration Initiative Petition
Twitter: @spinalregen
spinalregen@gmail.com 

Thank You!

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.