The World Cup

begins tomorrow. It will be “kicked off” by a teenager who has a paraplegic spinal cord injury, outfitted in a robotic suit. The event has created a stir in the media and caused a firestorm of debate in the spinal cord injury community.

The Brazilian government provided $14 million to fund development of the suit. In the world of medical research, this is not an enormous sum of money, but it certainly makes a difference in the underfunded area of spinal cord injury.

Those who support research and development in the area of robotics argue that it brings us closer to recovery of locomotion, and any sort of upright mobility is healthier than spending all day in your wheelchair. Many believe that cures via the path of regenerative medicine are so far away that they will not see a benefit in their lifetimes, whereas robotics offer more immediate promise. As for the World Cup event and given that spinal cord injury receives so little media attention, they claim that any publicity is better than none.

On the other side of the coin, proponents of a focus on regenerative medicine argue that the potential for robotics is much more limited: The devices will not help those with quadriplegic injuries, and they do not bring recovery for secondary complications like bowel, bladder & sexual function, neuropathic pain, and more. They would say that spending vast amounts of money on robotics at the expense of regenerative medicine only helps to keep people paralyzed.

What do you think? Should we spend our precious dollars on compensatory devices or repairing the spinal cord?

 

The Big Picture

For most of the summer I have been writing content and assisting with the design of our new U2FP website. At times tedious, at times a labor of love, this exercise triggered a lot of reflection on how we have grown and evolved in the 5 years since our last website remodel.

For me personally, my U2FP journey has been a hugely educational experience on many fronts:

• Understanding the science. This is an ongoing process, especially in such a complex field as neuroscience and regeneration. It’s not unlike learning about all the complications of a spinal cord injury. Slowly but surely we grasp the terminology, the sometimes grim realities, and finally a sense of what it will take to make things better.
• Assessing the landscape. Where does curing paralysis stand in the broader field of medical research and translation? When we identify good science, how do we attract investors and bring it to clinical trial? How can we make our cause a priority amongst such worthy competition? The answers to these questions change with the financial and political winds.
• Connecting with the community. This is far and away the most rewarding aspect of my job and the most energizing. It’s easy to get bogged down in the daily details of managing our programs – trying to catch up on emails, attending to the minutiae of organizing a conference, satisfying the various regulatory requirements. Just when I think that’s what my job is, I’ll hear from or read about or meet someone living with a spinal cord injury who is working so hard to make the very best out of a tough hand.

It’s a welcome reminder that in the end, our mission and our goals are about people. Less than 2 years after my son’s injury in 2002, I remember an “ah-ha” moment when I thought about all the extraordinary people we had met on the post-SCI journey. In order to make the best out of this life, you have to operate at a much higher level of purpose. You have to practice positive thinking on a daily basis; it’s so easy to falter.

For today, as we celebrate the launch of our new website, I want to take a moment to thank all of the people I have met along the way: for your courage, your determination, your perseverance, your grace, and for enriching my life.

Hope vs Hype

I hear and read it over and over again – cynicism in the spinal cord injury community when talking about a cure. I understand where it comes from.  Decades of time and billions of dollars that so far have not delivered a viable regenerative therapy. In my own experience, I remember hearing promises of “another 5 years” as a reasonable timeline to anticipate cures. That was 10 years ago.

Today’s world of constant media bombardment only fuels the hype. Almost daily we read stories of breakthroughs that may “one day” give paralyzed people the ability to walk again. So far, none of those predictions have come to reality.

It’s not just the media that misleads us. Around the world there are doctors and clinics offering stem cell and other specialized treatments, costing tens of thousands of dollars, and so far showing no verifiable efficacy. I have seen people with SCI work hard to raise the money for these therapies, head overseas with high hopes, and return home with nothing to show. They are reluctant and even embarrassed, understandably, to tell their supporters that the treatment failed.

And finally, we have some scientists who exaggerate the potential of their research, most often in an effort to raise more funding dollars. I find this to be the most unethical of the misleading information. The spinal cord injury community is a very vulnerable population. Many are desperate for any positive news that would give them hope of being able to breathe on their own, or use their hands. If they’re not yet cynical, they will hang on for dear life to a scientist who promises recovery.

In fact, we don’t have any therapy at this point, other than intensive exercise to promote neuroplasticity, that offers meaningful recovery of function. How do we fight our way through the hype to find good science worthy of our support?  The very best way is to take the time to read and understand published scientific papers showing verifiable data. Not all of us have the time or mental capacity for that task, however; we need trusted community leaders who will sift through the data and advise us.

Fortunately, this is the path that Unite 2 Fight Paralysis has chosen. We know that as a community we become empowered through education. We offer resources that will bring everyone up to speed on the science that as of today truly holds the most promise. For starters, visit U2FP Board Member Chris Powell’s SCI Research and Advocacy blog, and plan to join us in Irvine, California for the 7th annual Working 2 Walk Symposium.

Speaking Truth to Power

If we’re ever going to gain traction as Cure Warriors, we’ve got to speak out to the various individual and organizational leaders in the spinal cord injury community.  Thanks to the persistent efforts of Dennis Tesolat (also known as Mr. “Stem Cells & Atom Bombs”), there is a respectful yet pointed appeal to the Rick Hansen Foundation (RHF) that as of today boasts over 700 signatures from around the world.

The Foundation has long proclaimed its vision to be “a world without paralysis after spinal cord injury”.  That’s our goal, too, so several months ago Dennis and a few of his friends sent RHF’s CEO a simple request:

• “Please outline your spending on translational research for central nervous system regeneration, i.e. a cure for spinal cord injury.”

The response failed to outline any specifics other than what’s available in their annual report, i.e. – “81% goes to charitable programs.”  Dennis wasn’t satisfied, so he decided to get organized and continue to ask questions.  He asked for more details on RHF’s spending, and for Rick to publicly answer the questions at next week’s Interdependence Conference of SCI leaders.

I imagine most of my readers have already signed the appeal, but if not, there is still time if you do it today.  It’s an easy, one-click process from the Stem Cells & Atom Bombs website.  Follow this link.

The Rick Hansen Foundation earns annual revenues in excess of $20 million, 71% of which comes from Canadian national and provincial government funds.  This is an extraordinary amount of money, and with these types of resources the Foundation should respond to the wishes of the SCI community.

We respect the work that RHF has done to improve accessibility and quality of life for people living with SCI.  At this point in time, however, with so much promising regenerative research on the cusp of translation, it’s time for the Foundation to turn its attention and its resources to the achievement of a cure.  As survivors of spinal cord injury and family members, we have the right, and even moreso the responsibility, to speak up to those in power at the Rick Hansen Foundation.

Why Are We Still Paralyzed?

It’s a pretty basic question for a Cure Warrior.  As we ponder the multifaceted answers to that question, we begin to grasp the enormity of the task in front of us.   What are the biggest challenges?

1. Scientific: Figuring out how to regenerate the appropriate pathways that will bring about functional MOTOR recovery in the chronic injury.  As we begin to experiment with therapies in humans, we’ll then need to identify the best DELIVERY method(s).
2. Translation: Okay, we’ve had success with a couple of therapies in the laboratory.  How do we raise the money, get regulatory approval, and enroll enough patients to run a human clinical trial?  As a case in point, the Geron trial proved to be a massive and ultimately failed undertaking.  They ran out of money and couldn’t enroll sufficient patients before they could prove much of anything.
3. Marketing: Any investor looking to bring a therapy to market had better have an excellent business plan, or the therapy will never reach widespread use.  We have seen this play out with the introduction of several neurotechnology devices.  Many of these tools have proven to be beneficial for clients, but implementation is hindered by lack of awareness and/or failure of insurance companies to cover.
4. Apathy: The SCI community suffers from a lack of focus and energy when it comes to pushing for curative therapies.  We all know how living with SCI drains one’s physical, financial, and emotional resources.  And to date, we haven’t seen anything in the way of a tangible scientific breakthrough to galvanize the troops.

How can you or I address these challenges in a meaningful way?  First and foremost, and I know I’m repeating myself, STUDY THE SCIENCE!  For starters, you’ll need to understand the terminology.  The more reading you do, the more researchers you talk to, the more leaders you network with, the more you will get comfortable in the conversation.

Where to start?  Check out the U2FP Clinical Trials Table for continuous updates on what’s happening in the field and an introduction to acronyms.  Read our lay-friendly reports from recent lab visits with top researchers.  Join us at the Working 2 Walk Symposium in Irvine, California, this November.

We need people with knowledge and passion to join this fight and commit to the long-term.  If we can invent the atom bomb, if we can put humans on the moon, if we can map the human genome, surely we can repair the injured spinal cord.  It’s all about priorities.  Making a difference starts with us, and I look forward to the day when we don’t have to ask the question, “Why are we still paralyzed?”