If there is such a thing as being lucky in the wake of a spinal cord injury, it applies to my son.  Had his neck broken just a few millimeters higher, he would not have the use of his hands or arms.  He used every ounce of his energy and determination to achieve his goal of independence, but still could not have made it without the extraordinary support of his family, friends, community, and numerous strangers.  Such good fortune does not fall to many who are stricken with SCI.

While we celebrate and take pride in his accomplishments, we know that he represents the minority of those living with SCI.  According to the National SCI Statistical Center, at 20 years post-injury, only 35% of persons with a spinal cord injury are employed.  This statistic is not just a function of injury level; the employment rate for people with paraplegia is only slightly higher than for those with tetraplegia.  There are numerous social, psychological, and economic barriers that conspire to keep persons with SCI out of the work force.

The unemployment rate is but one of many “invisible” secondary complications of spinal cord injury.  While the media is full of “inspiring” stories about people living with SCI, much less is said about what goes on behind the scenes.  No one wants to start a pity party, but if we’re going to achieve “cure consciousness”, we need to speak the truth about:

• the loss of bowel, bladder & sexual function;
• psychological trauma & suicide;
• loss of time, productivity, and often independence;
• a host of other issues that accompany spinal cord injury.

For every heartwarming story in the media, there are hundreds more untold about people and the daily realities of SCI that no one ever sees.  The public is often led to believe that one can achieve recovery through hard work and determination alone; if this were true, the majority of survivors would be up and walking around.

I am extremely proud of what my son has accomplished since his injury, and at the same time appreciate that it was made possible by some good fortune and a remarkable support system that augmented his efforts.  I also know that he would readily embrace the opportunity for regenerative therapies that could give him back a healthy body.

Mr. Dart was stricken with polio at the age of 18, and this life-altering event set him on a remarkable life journey.  A series of encounters with other polio patients, with the writings of Mahatma Gandhi, and with 3rd world “rehabilitation” centers charted a course that eventually led to passage of the ADA.

Throughout his life of advocacy, Justin Dart embraced the principle of inclusiveness and shared his vision of a “revolution of empowerment” – a revolution that would “eliminate obsolete thoughts and systems”, and give every human being the right to develop his/her capacities to the fullest.  Shortly before his death in 2002, he published a manifesto of extraordinary wisdom and lessons for the future, “Toward a Culture of Individualized Empowerment” (it’s a worthwhile read).

One of the most humbling and frustrating aspects of paralysis is the loss of power, and in many cases, independence.  If Justin Dart were alive today, I have no doubt that he would join our effort to revolutionize the way we look at paralysis.  To teach the world that it is a curable condition, that we, the grassroots advocates, the cutting-edge research scientists, and the pro-active investors, can empower ourselves by organizing, educating and advocating until a cure is achieved.

On another note, this week’s news that Geron is dropping their clinical trial in spinal cord injury shocked and angered much of the community.  Personally, while this development is disappointing, I don’t find it surprising.  As I’ve said before, achieving marketable therapies is business, not personal.  We can take some positives out of the fact that Geron made an enormous investment to demonstrate that hESC’s could be used safely in humans, a step that has hopefully paved the way for future therapies to pass through the regulatory process more quickly.

Martin Codyre (Ireland), Harvey Sihota (United Kingdom), and Dennis Tesolat (via Skype from Japan) spoke frankly about what it’s like to sit in a chair and observe:

• Promising therapies such as cethrin and hypothermia that never make it to Phase III trials because of financial and regulatory hurdles;
• Large SCI organizations that use the word “cure” in their promotional materials, but spend relatively little on restorative research;
• The lack of research attention paid to chronic injuries, when arguably that population has the greatest need and potentially the greatest return on investment;
• A perceived lack of collaboration, commitment, and coordination amongst the stakeholders to push a product to market.

Of course it’s our goal at Working 2 Walk to motivate members of the SCI community to move beyond observation and into action, which became the focus of a lively exchange between the panel members and audience.

A few of the more powerful comments:

“I think that what we’re going to do is take up our own part of the job. What is it? If you’re paralyzed and you have a part time job, your full time job is moving this along. If you’re paralyzed and you have a full time job, your part time job is moving this along.”

“A lot of us are speaking about hope, and that’s awesome, but we need to talk about action.  I heard Jerry Silver say ‘I’m fine.’  Well, I’m happy that you are fine, but I am not fine.  I’m not here to criticize, but I want to know how we get well. Let’s start with a goal: we want clinical trials in two years and manage toward it.”

“We could be much further along toward a cure, which I define as getting out of the chair. We can’t be happy just with bowel and bladder, not that we all don’t want that. We have to take what we can in the short term but look toward the long. We need to push for a big change, or we’re all going to die in these chairs.”

Working 2 Walk itself is an effective catalyst for change, bringing together scientists who in the presence of consumers may be more motivated to collaborate, building the knowledge base of advocates, and creating unique networking opportunities.  But more needs to be done on a year-round basis.

Translation of therapies from the laboratory to the clinic is often called “The Valley of Death”.  In a recent Science Daily article about stem cell treatments for spinal cord injuries, Dr. Michael Fehlings noted that “At this time, a strong patient advocacy base would likely help provide momentum to help translate current research into clinical applications.”  Let’s get going.

Everybody should take a turn at event organizing at some point, if just to gain an appreciation of the minutiae that need attention every step of the way.  I’d venture to say there are similarities with trying to get the nervous system re-organized after a spinal cord injury.  Talk about connecting the dots!

Laboratory research has produced a number of theories about the best way to go about restoring function lost to paralysis.  Our current real-time therapies include adaptive equipment, intensive exercise, electrical stimulation (FES), and locomotor training, all of which have shown the ability to enhance recovery.  To date, though, none of these could be considered a cure.

At Working 2 Walk we will hear a variety of theories about the best way to go about achieving curative therapies, including:

• nerve bridging enhanced by chondroitinase to promote regeneration;
• the use of biomaterials as part of drug and cell therapy treatments;
• the role of neuroplasticity in repairing the nervous system;
• lab results and the first stage of clinical trials using different cell therapies.

Slowly but surely we are assembling the pieces of the puzzle that will one day fit together and provide answers to the complex problem of curing paralysis.  As one scientist said to me a few years ago, “Most people believe that cell therapies will offer solutions for people with SCI; the devil is in the details.”

1. Sell an idea that will earn a grant to secure funding for lab equipment and personnel;
2. Sell the progress of their laboratory research to raise more money until a hoped-for breakthrough is achieved;
3. Sell the story of a unique discovery to a peer-reviewed journal for publication;
4. Sell the science to an investor who will start the process of bringing it to market.

Back in 2006 when we organized our first conference, we had no idea whether anybody would come.  But as we started planning, we gave a lot of thought to picking an appropriate name.  We didn’t call it “Wishing 2 Walk” or “Hoping 2 Walk” or “Dreaming 2 Walk”; we chose “Working 2 Walk”, because we believed that people living with a spinal cord injury could roll up their sleeves and contribute to the cure effort.

Our purpose at W2W is to bring together all of the stakeholders in the march toward cures and create opportunities to exchange knowledge, strategies, and priorities.  Our research scientists continue to work hard at solving neurological problems at a molecular level.  Biotechs have begun to invest in promising science and the clinical trial process that will bring it to market.  A handful of advocates are opening the doors of communication that will hopefully lead to enlightened decisions on the part of policymakers.

If you’re sitting in your wheelchair wanting your healthy body back, you may be thinking that none of this is happening fast enough.  You’re right, but unfortunately, bringing cures to reality is not just about the science.  It’s just as much about the financial and regulatory hurdles that must be overcome, and I think this is where patient advocates have a real opportunity to make a difference.  We’ll talk about how at Working 2 Walk.

“I’m a hard core SCI advocate in the purest form.  I have no preference on which type of cell, growth factor, inhibitor or country to discover. I have no pre-concieved notion about the ultimate SCI cure.  I consider it all nothing more than a calculated dog and pony show until something is actually proven safe and restoring function.  I am willing to listen and learn about the science and others ideas. I am willing to advocate for a sci cure by helping in any way possible to get the therapies to clinical trial so we can find the very best and not waste time or money on anything that’s going downhill.  I remain open minded and interested.”

As Cure Warriors, our immediate goals are:

• Learn, learn and learn some more about the science – Working 2 Walk is a fantastic, affordable opportunity to educate yourself;
• Follow the progress of clinical trials and push for more.  This is where the rubber meets the road, and we’ve got to speed up the pace of clinical trials if we’re ever going to find out what works and what doesn’t.  U2FP’s Clinical Trial Table is an excellent resource to get you started;
• Armed with knowledge, get vocal.  Talk to your communities and the media.  Question the scientists, the funders, and the regulators.  Support the best science and the strategies that will accelerate the achievement of a cure.

When it comes to making policy and delegating research funds, the individuals who have the most “skin in the game”  are those directly impacted by a disease or condition.  Unfortunately, too often they are not part of the conversations that lead to decision-making.  At U2FP this issue is rising up our priority list as we watch the regulatory environment strangle medical innovation.

History does provide us with at least one outstanding example where patient advocacy led to expedited treatments – the AIDS community’s response to the 1980s epidemic and their subsequent scientific and political involvement.  Currently, the California Institute of Regenerative Medicine (CIRM) has a governing board with representation from science, industry and patients.  One of the board’s members, Duane Roth, has written a convincing argument for the participation of patient advocates in his essay, “A Third Seat at the Table”.

One of our outstanding SCI community advocates and bloggers, Don Reed, also sits on the CIRM oversight board.  In case you haven’t heard, CIRM recently awarded $25 million to Geron Corporation to support clinical development of GRNOPC1, the cell therapy being used in Geron’s Phase I clinical trial for spinal cord injury.  For a fascinating report on the behind-the-scenes negotiations that led to the decision, read Don’s blog entry, “California Versus the Valley of Death”.  The story is a testament to the power of patient advocacy.

Considerable time and money is being invested in the pursuit of a “technological” cure.  When I talk with people who have spinal cord injuries, many of them look with disdain at this approach.  They don’t want to have to “flip a switch” or wear an exoskeleton in order to regain function.  They believe that our resources should instead be directed at stem cell therapies that hold the promise of regeneration and a true repair of the spinal cord.

What do you think?  This coming weekend I will attend the Spine Symposium and State of the Science portions of the annual International Spinal Cord Society (ISCoS) meeting.  The organizers are asking for consumer input to inform a research agenda for the next 10 years.  As we all know, research into curing SCI is massively underfunded.  Even as we work to increase that funding, where should we spend the precious time, money and energy that is available?

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When Unite 2 Fight Paralysis defined its mission to educate and advocate for curative therapies, we heard the quote from many quarters, “It’s a marathon, not a sprint.”  This warning is unlikely to daunt anyone who lives with a spinal cord injury.  As we know, not only do you lose physical abilities with SCI, you also lose TIME.  Just getting up and out the door in the morning is a marathon.

Our first couple years felt like the first couple miles of a marathon.  If you’ve ever done one, when you start out the finish line seems a long ways away.  Back in 2006 and 2007, the research reports we were hearing at Working 2 Walk were mostly about basic science and the lack of any real promising therapies in the lab for spinal cord injury.  Attendees from the SCI community felt discouraged.

Team U2FP at the 2010 Finish Line - Click on the picture to support our 2011 Team

Gradually, though, the reports became more promising.  The world of stem cell research took off.  Scientists began solving some of the neurological puzzles on a molecular level, and translating their findings to potential therapies.  Science is moving out of the lab and into clinical trials.  We’ve got a couple miles under our belt now and are picking up momentum.

Just like the U2FP team that is walking in the Seattle half-marathon, we’ll go faster and have more fun if we advocate TOGETHER.  Research scientists, investors, practitioners, and community advocates must investigate, question each other, strategize, collaborate, and most importantly unite in order to reach the ultimate finish line – a cure for paralysis.