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.
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, use their hands or walk. 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.