Note: Some of you received a version of this message from us in the mail recently.
I took my first ride in a Tesla the other day. I must admit, it was pretty nice. And it happened thanks to John Gensel and Timothy Faw, two SCI researchers who were willing to split a fancy Uber with me as we all headed to the New Orleans airport from the American Spinal Injury Association (ASIA) conference.
Our driver and the Tesla’s owner, Gumbeaux, represented a kind of New Orleans dream cliché, as his name aptly suggests. The conversation began around his Tesla and then quickly moved to ghosts, astral projection, Egyptians, his Choctaw ancestry, the Pleiades constellation, jazz (he’s a professional trumpet player), and finally music in general.
When I told him my son was a musician with a spinal cord injury, everything stopped for a moment. “Wait, what?” he said. And then suddenly, we were all adding new flavors to an already rich conversation that now included the ASIA conference we had just come from, spinal cord injury in general, and the state of SCI research.
The new information intrigued Gumbeaux and enlivened us all. It got me thinking about the nature of our conversations around cures here at U2FP - that we never know what we’ll find until we dig. Or, said another way, we never know what we’ll find until we agitate.
Yes, we at U2FP are agitators. I think the word gets a bad rap, especially these days in our divisive political context. The dictionary definition of agitate that I’m thinking of is to ‘stir up’ or ‘set in motion’.
I spent quite a bit of time at the ASIA conference in good-natured, agitated conversation. As always, I am simply trying to stir in the perspectives of our SCI community within the clinical and scientific conversations.
At U2FP, we are constantly positioning and repositioning ourselves to stir up the reality of the SCI community’s experiences in smarter and more effective contexts. And it’s not just a figurative imperative for us.
U2FP wants restorative function to be set in literal motion: whether it's better bowel/bladder control, the strength of a hand’s grasp or the return of sexual function. These aren’t abstractions for us, but everyday challenges that deserve - at the least - some informed agitation.
I think agitation is at the heart of a lot of what we do and has gotten U2FP into some influential and powerful spaces. Consider our:
- Cure Advocacy Network, which brings people with an injury into the research-funding process via legislative advocacy, helping to prioritize what treatments are most important to us.
- Lab Rats initiative, which places SCI community members into research labs to help inform and make that lab’s outcomes more relevant.
- Annual Symposium and Working Groups initiatives, which convene experts in every SCI related field, stirring in our community’s knowledge and passion of lived experience, leading to strategies that challenge us all to think beyond the current conventional approaches.
We are all rolling and walking around in the bubbles of our own individual experiences. What can we set in motion if we speak up and stir up the conversation towards cures for SCI?
Whether you’re stirring up a conversation in an Uber ride, or leveraging your time, talents or treasure on behalf of our work, this is our invitation: agitate with us.
PS - Check out our newly released 2021 Annual Report, and keep this agitation theme in mind. Then consider becoming a monthly donor to U2FP. Not only will you be supporting our important work, but you’ll have an open invitation to commiserate with myself and our staff on our Quarterly Investor Calls. These are free flowing idea and feedback sessions where you can find out what’s happening behind the scenes of our work and help shape where we’ll go next. I find them invigorating. I hope you’ll join us.