Oct 30, 2024
Building Our Point of View
Matthew Rodreick
My grandfather's nickname was Stormy Rodreick. He was a pilot, a barnstormer, crop duster and bootlegger delivering moonshine across the Kentucky/Ohio border. I never knew him, in large part because he was illegally married to two other women at the same time he married my grandmother. But stories of who he was, and wasn’t, were formative for me. He was a rebel, criminal, liar and a womanizer.
My grandfather, Stormy Rodreick, posing in front of his plane back in the day.
I used to wonder if our shared blood meant I was destined to follow in his footsteps. Fortunately, I’ve only manifested the rebel gene and have resisted the rest. More importantly, I’ve likely been a seeker of truth because (I later learned) my family's stories were often wrapped in polite omissions or lies.
I wish I could’ve heard about my grandfather directly from him. How might his story have been different from my grandmother’s version? What assumptions about him would I have kept or discarded from the dramatic highlights of his life? And how might I think differently about myself as his descendant? Stories don’t define us, but they do inform who we are and what we choose to do or not do.
There is also a story about Paralysis (capital P) that we all contribute to with our own individual contact with the injury. And this story gets absorbed and interpreted through the system that is working to cure paralysis. It’s a whole bunch of stories told by scientists, foundations, government agencies, and advocacy orgs like us.
Don’t misunderstand me: I believe everyone is striving to share the fullest, most accurate rendition of their scientific discoveries, their funding portfolio, their regulatory safeguards and their community targets. But just like my grandfather’s story was filtered through my grandmother, we are all holding only a small portion of the full story. And the only way to get closer to the full story is to bring all those voices together, especially those who are impacted the most by the problem of spinal cord injury: those who live with it.
Peter Nowell (left), a U2FP CAN Advocate who helped pass the $3M Ohio SCI Research grant bill in 2019, poses with me and Anthony Waters (right). Anthony is a longtime monthly donor and champion of our work.
This is in some measure why we feel that our recent symposium was so valuable. We had the opportunity to bring together a diversity of stakeholders who shared their perspective on what’s happening with spinal cord injury research. And we provided lots of opportunities for people living with SCI to tell their stories and see how and where they fit into the scientific story.
Probably the most poignant example of this was during our point of view sharing session during day two at lunch. This was the brain-child of Laura Grabowski, a scientist who lives with an SCI and now works in Candace Floyd’s lab at Emory (the Title Sponsor of this year’s conference).
Laura Grabowski (left), a C7 incomplete, poses with her trainer from Reneu Health, Mica Gaila (right).
Laura kicked off an hour-long ‘open-mic’ session and opened up the floor for anyone in attendance to share why they were at the meeting, how they were feeling about the presentations and what they wanted this community of stakeholders to know about them. We heard from a lot of folks with SCI, starting with Laura, but also their spouses, parents and friends, all of whom painted a beautiful portrait of our community’s hopes, frustrations, challenges and efforts to change the status quo.
What will be the legacy of these small stories? How will they contribute to the larger story of cure research as it continues to grow and develop? How long will we have to wait before we can tell the story of how a series of discoveries were successfully translated into restorative treatments?
Obviously, none of us know. Companies like ONWARD Medical, NervGen, Lineage Cell, and Aneuvo (all of whom sponsored this year’s conference) as well as SpineX and others may be close to telling the newest pieces of this narrative.
A representative sample of scientists and SCI community members gather for a group picture on Saturday.
But the only thing I know for certain is that if we don’t come together to tell all our stories of SCI, it’s going to take a lot longer than it should to find cures for paralysis. We need every angle, correction and revelation that comes with each of your stories to get closer to a recovery story we can all see ourselves in.
Many of you who attended the Symposium commented on how much the Point of View session impacted you. But I know that some of you who were there, and many more of you who couldn’t make it, have important perspectives you weren’t able to share. Well, there’s no time like the present! We’d love to hear your story - feel free to respond to this email and share about your journey with SCI. Then consider participating in our work - whether as a Lab Rat, a Team U2FP athlete, or express your interest in becoming a CAN advocate. We want to hear your story so we can add it to the growing momentum of our work.
Join us,
PS - We’ve raised another $20,000 in the last two days and are now less than $10k away from our goal of $100,000. Please consider donating whatever you can today so that we can meet our $100k goal by the end of the day tomorrow.
