Like most of you, I’ve had many conversations, read many articles and been inundated with messages about the coronavirus. Understandably, there are a lot of stirred-up feelings that this shelter-at-home reality has brought with it.
Specifically, several people I know with a Spinal Cord Injury, and family members like me, have reflected on how the current situation echoes parts of our experience from the first year with the injury.
I’ve been thinking about this “injury-pandemic” connection for weeks now, and feeling a similar resonance: the disconnect, the apprehension, the fear, the vicarious voyeurism of others’, and the ‘so, what happens now?’ anxiety.
During the first year of my son’s injury, I wrote a CaringBridge post about feeling as if our family had been thrown off the highway of life and stuck in a cul-de-sac, waiting to find the on-ramp.
Now it feels like the whole world is in a cul-de-sac, and so my mind wanders in two directions at once - as if looking toward two horizons simultaneously - while we are in this holding pattern.
The first is toward the horizon of memory. For those of you who have not experienced the injury yourself or in your family (or some similar traumatic event), maybe now you can catch a glimpse or hear an echo of what it feels like for those of us who have.
The people change.
You start adapting in all sorts of new ways: with new language, and new habits.
Things you hadn’t dealt with come back with a vengeance and the things you have dealt with become powerful lifelines.
In short, the world has changed.
But in the same way that we adapt and navigate this new world with an SCI, we will also adapt and learn to navigate the post-COVID world.
This is why the second direction my mind goes is toward the horizon of the future. What does this shutdown mean for the effort to cure paralysis?
So much promising research has slowed. Most clinical studies and trials have simply stopped until the risk is lowered enough that the machinery can be turned back on again.
But when? How long will this go on and how much time will be lost?
At the moment, our sense of urgency for curative interventions must reside uncomfortably with the present shelter-at-home orders.
In addition to the research slow-down, many aspects of our work at U2FP have required us to realign our priorities. Our staff has spent the last several weeks adjusting the strategy we had laid out for this year. Legislatures are running minimally and of course, thoroughly focused on the impact of COVID-19, as they should be.
So, our state efforts have been put on pause. Research has slowed significantly and clinical trials have all but stopped. The opportunities to speak about the SCI community at scientific conferences have been cancelled and will hopefully be rescheduled.
This is all quite frustrating given the sense of urgency that we in the SCI Community feel.
At the same time, I can’t help wondering about all the great, fundamental questions the world is collectively asking right now. Namely, all the way from the view of the Himalayas from northern Indian cities for the first time in decades to the way in which research is prioritized, conducted and shared.
For years now I’ve been thinking about this idea of a road map to cures. Ever since giving a presentation at Working 2 Walk in Minneapolis in 2016 (which was just raising a number of questions), several long-time advocates have asked when U2FP is going to craft a road map, a kind of all-encompassing strategy.
Those persistent questions have driven us to keep asking hard questions of our initiatives, and keep refining our strategy. Questions like:
How do we create a collaborative road map where there are no roads; especially when the scientific and advocacy landscape is so diffuse and fractured?
How do we identify and support curative treatments for SCI when there hasn't yet been a single successful translation?
And how do we deal with influential scientists who believe cures for paralysis (especially chronic) are a fool's errand at worst and naive to believe at best?
These are the hard questions U2FP is asking as we move our work forward. We simply view them as roadblocks; roadblocks that require us to anticipate, plan, disrupt and execute a better road map.
I believe that what U2FP has been doing all these years is helping to create an SCI Community-centric GPS. A GPS that helps us to understand where we are, where we’ve been, what and to whom we’re connected, and - realistically - where we are in relation to cures.
Most importantly, this GPS U2FP is helping to create is one that any one of us can use because what we do have is influence. No one else knows this injury like we do and because of that we have to speak up.
And speaking of concrete hope, let’s consider where the current beta-version of our GPS - which U2FP has been integral in helping to design and produce - has brought us. Starting from that cul-de-sac of my son’s injury over 10 years ago, I had no idea I could’ve joined an organization 5 years ago that would help to kick start several clinical trials. A direct result of the legislative funding our Cure Advocacy Network (CAN) activists passed in Minnesota, Washington, Pennsylvania, and Ohio.
The clinical trials the CAN has funded are currently restoring function in people’s lives - almost 40 and counting between the EStand Trial, the Mayo Clinic’s ongoing Neuromodulation studies, the Mayo trial using Mesenchymal Stem Cells, and the Transcutaneous Stimulation studies at the University of Washington. These were all the direct result of our CAN state funding initiatives.
With the passage of the Ohio and Pennsylvania SCI Research Grant Programs we intend to see that number rise as we nudge research discoveries into human studies. And there are many others influenced by our allies in this work.
U2FP’s work is predicated on the belief that the SCI Community can and should influence the research enterprise that is responsible for delivering recovery for paralysis.
To the immense credit of my predecessors and the founders of this organization, we have been successful in making that belief a reality.
We have much more work to do, but we need your help. We can’t change the past or predict the future. But we can always take stock of this moment to better understand where we are right now, who is with us and how to get where we need to go, together.
Join us - let’s pave the road ahead!
P.S. If you haven’t read Sam Maddox’s (our SAB Director) survey of a number of SCI scientists about the effects of COVID on the research landscape, check it out here. Or listen to our podcast interview with researchers Sasha Rabchevsky (University of Kentucky) and Michael Lane (Drexel College of Medicine).