Twenty years ago if you were diagnosed with HIV/AIDS it was a death sentence. Nowadays AIDS is a treatable, some would go so far as to say cured, disease. I’d love to be able to take a few pills everyday to keep my C5 complete spinal cord injury at bay. I’d certainly consider that a cure. So if it was a death sentence just twenty years ago how did it move to being practically cured so quickly? Well certainly one of the reasons was the activism of the AIDS advocacy groups like the somewhat militantly named ACT UP (AIDS Coalition To Unleash Power) amongst others.
It is in the DNA of organisations such as these that the spinal-cord injury community can find strands of knowledge that we must learn from to accelerate progress in our war on paralysis. Unite 2 Fight Paralysis is certainly one of those organisations attempting to learn from this DNA and applying those lessons in the real world to good effect. It is up to you, Dear Reader, to actively get involved in the quest for a cure. We cannot merely sit on the sidelines as spectators and well-wishers and hope that somebody else will do it.
I had my injury four years ago and immediately started looking for communities of like-minded cure oriented individuals around the world. Unsatisfied with what was available and being told to me here in Ireland I turned to the web. I spent hours upon hours reading forums like CareCure (which began as Spinewire in the nineties and is managed by the extremely well-known and accessible Professor Wise Young and a group of four SCI advanced practice nurses who cover the SCI-Nurse persona and which is definitely worthy of an entire article to itself). With the help of posts from CareCure and other commentary I painstakingly and begrudgingly discounted all of the scam therapies from around the world promising dubious miracle cures for everything from multiple sclerosis to spinal-cord injury in exchange for between tens and hundreds of thousands of Euros. Eventually through all of this research I came across Unite 2 Fight Paralysis and their flagship conference – Working 2 Walk. It was to be my first stop in my global mission to find out everything I could on what it was going to take to cure paralysis.
Within months of my discharge from hospital I flew to Chicago in August 2009 to check it out. I really did not know what to expect. Perhaps I was hoping for breakthroughs, miracle cures even. I desperately wanted one. I certainly did expect to find lots of people in chairs fighting for a cure for paralysis but realistically speaking and based on my extensive study beforehand I went because it would have the highest concentration of scientists and surgeons that appeared to have expertise in the field of spinal-cord injury cure. I rationalised that it would be most efficient to go there to meet with all of these people rather than attempt to meet them all individually. I had discounted the underlying organisation that was putting on the event, it almost seemed secondary to me at the time. It was the scientists that were going to make the immediate difference. Or so I thought.
To give you a little background on Unite 2 Fight Paralysis from their website:
In the spring of 2005, just 6 months after the passing of Christopher Reeve, six “bionic women” organized the first Rally in Washington on behalf of the spinal cord injury community. Three of the women – Pam Bailey, Susan Maus, and Betheny Winkler – had spinal cord injuries or disease themselves. The other three – Faye Armitage, Suzanne Poon, and Marilyn Smith – all had sons with spinal cord injuries. Their collective determination to fight for a cure led to the historic Washington Rally.
Motivated by the knowledge and energy gained at the Rally, Susan, Betheny and Marilyn founded Unite 2 Fight Paralysis (U2FP) in late 2005, and a unique advocacy organization was born. In 2006 U2FP introduced the Working 2 Walk Science & Advocacy Symposium, bringing research scientists, practitioners, investors, SCI survivors and family members together for the first time. This annual conference continues to foster knowledge, collaboration and power for all of the stakeholders committed to achieving a cure for spinal cord injury.
Through the years Unite 2 Fight Paralysis has stayed true to its roots. We are governed and staffed by people who have a personal connection to paralysis; we live with it every day. We don’t spend a lot of money on marketing or fundraising or salaries. We focus our time and energy on understanding the science, and bringing key players together who can advance the best therapies as quickly as possible. We are the Voice of the Cure.
What I found was a dedicated grassroots organisation with some extremely committed people at the helm who were sick of the lack of progress being made by the major organisations and foundations in the field and had decided to do something about it themselves. Although not formally scientifically trained they were actively learning about the science and educating themselves about the pitfalls of the bench to bedside process. This was along with learning about the scientific discovery process that would need to be mastered to follow the AIDS groups towards curative therapies not to mention the challenging task of putting on the event and raising money to stage it and in many cases raising children. Most of the primary players were in chairs or had family members in chairs. I was hugely impressed by their commitment and drive. There was insane organic knowledge in this group distilled over decades. Which made sense, seeing as they had been in the fight for many many years and in essence this group is the real world embodiment of the CareCure forums. These extraordinary women had met on the forums and decided to organise that Washington rally. It was, to the best of my knowledge, the first serious real world meetup of CareCure members mobilising for our cause. I certainly had a lot to learn from them and learn I have.
I think I was originally asked to write a report on the science coming from Working 2 Walk 2011 from Washington DC and while there was certainly a lot of promising scientific avenues presented I really do not think that is the most important information to disseminate to readers of Spinal News magazine at this stage. I also, definitely, do not have enough room here.
The important thing to get across is that organisations and events like these exist! The true value of this event is that it brings together people with Skin in the Game. It educates us, it encourages us to work together and it forces us to think truthfully and deeply about the incredibly difficult problem that spinal-cord injury represents. Let’s face it, this is a significantly tougher problem than going to the moon butmaybe that’s because we already know how to get to the moon. If you really are looking for a commentary on the science then check the link at the end of this article or else give me a call, I’d love to discuss any of it. It’s technical but then that’s the point:- this is an incredibly technical problem (not to mention the politics) and without us learning at least the basics of the science and the barriers to medical treatments and actively applying that knowledge then not only are we condemned to be in chairs for the rest of our lives but we are condemning those not yet injured to the same fate.
If you’re looking for good news there certainly is some. That is that given how terribly poorly the SCI Community and the field of neuroscience has addressed the spinal cord injury problem over the last decades it means there is significant scope for innovative and laterally thinking organisations to make significant progress in the field in a relatively short amount of time when working within a truly globally integrated and open strategy. It is in collaborating in the ideation of these organisations and this strategy that I dedicate a significant portion of my time to, but that, too, is not the point of this piece.
What is absolutely for sure is that the spinal cord injury community needs to engage with these types of events and organisation more as participants and advocates for the science rather than expecting science and business to deliver the treatments we so desire. Unfortunately for us this simply will not happen, just ask the AIDS guys.
The 2012 Working 2 Walk Science & Advocacy Symposium will be held in Irvine, California on the 1st and 2nd of November. The scientific speakers & science being presented are truly state-of-the-art and hold genuine promise of being translated to the bedside within 5 to 10 years. Sadly, there will be no miracle cures but coming to this event is an incredibly good first step towards helping to making spinal-cord injury as treatable as AIDS. That is, of course, if you care as much as the AIDS community did, I know I do.
You can follow me on twitter: @martincodyre or email me at firstname.lastname@example.org.
Unite 2 Fight Paralysis: www.u2fp.org
CareCure Forums: http://bit.ly/OTRqwW
For a brief no BS primer on the science presented at Working 2 Walk in 2011: http://bit.ly/Oid5xm