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Celebrating Cautiously

Celebrating Cautiously

Jered Chinnock walks down a clinic hallway with his therapy team at the Mayo Clinic in Rochester, Minn. on Sept. 18, 2018. Chinnock, paralyzed since 2013, is taking steps again thanks to an electrical implant that zaps his injured spine and months of intense rehab as part of a medical study at the clinic. From left are physical therapist Megan Gill, Chinnock, kinesiologists Daniel Veith and Margaux Linde, and doctoral candidate Jonathan Calvert.
AP Photo/Teresa Crawford

Unless you’ve been living off the grid AND under a proverbial rock, you’ve no doubt seen the multiple news reports regarding the ongoing Epidural Stimulation studies at the University of Louisville and the Mayo Clinic. The reports are based on these articles in the New England Journal of Medicine & Nature (the latter includes Megan Gill as one of its authors, a presenter at this year's Working 2 Walk Symposium). It's encouraging news, and has certainly captured the media spotlight.

Frankly, when you see two people with spinal cord injuries up out of their chairs and taking steps, it's hard not to get excited. Just take a look at the AP photo above.

But I want to take a minute to remind all of us - including myself - of a couple of things.

First, there’s still much to understand about this strategy before we can rush to claim that THE treatment has been found. It hurts me a little to say that, but I owe it to all of us to say it nonetheless. It is exciting. But, we must remain clear-eyed and diligent. And that means asking lots of follow-up questions, such as:

What are the specific implications of this?

How will it continue to be researched? and can it be validated more quickly and less expensively?

What are the targets our community is most interested in?

How can it be validated beyond the handful of people who have been studied?

And what can we expect from this good news for everyone with a SCI?

Fortunately, we have organized a trio of presentations from Megan Gill, Andrei Krassioukov and David Magnuson (view our Agenda here) to discuss this very subject. AND - just as importantly - to afford you the time and space to participate in that critical conversation.

We need everyone's voice to push this movement forward - and that includes YOU. If you haven't registered for Working 2 Walk 2018 yet, take a minute and Register Now

In the meantime: here are some previous Working 2 Walk presentations that provide more context on this topic: 

Second, both of the studies that have been covered by the media in the last 72 hours have been funded in part by State SCI Research Grant Programs. This is so important to understand: public funding is not just a mechanism for stabilizing funding of these ongoing studies, but it also provides a path for people from the community to voice their opinions on the prioritized outcomes from these kinds of studies.

U2FP is helping advocates around the US to bring these initiatives forward. In fact, I’m writing from Harrisburg, PA where we are very close to passing a $1 million appropriation to fund SCI research in Pennsylvania. I was in Ohio last week doing the same thing there. These efforts are vital because they bring our community to the decision making table. Please follow these efforts (Facebook ; Twitter) and raise your voice so we can pick up speed to expedite research towards the outcomes that matter to our community.

I’m excited by the news, and at the same time, I know there’s more work to do. Hope is a good thing, a necessary thing along this road, but its not the destination. And that’s where we need to get. So let’s get there together.  

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