Dec 4, 2024
The SCI Translation Factory
Matthew Rodreick
Note: some of you may have received a version of this letter in the mail last week.
My son Gabriel has been injured for over 16 years. In that time, there have been no meaningful interventions that have improved his quality of life, let alone returned any of the functions he lost after his injury.
If you had told me back then that there would still be no treatment options for SCI, I’d have likely read my current self the riot act, demanding to know what I've been doing all these years. This injury is just devastating. And it doesn’t let up. Which is why we can't let up.
My son Gabriel Rodreick, pictured above, from his website (gabrielrodreick.com). Photo credit: Tyler Croat.
I am impatient with the pace of recovery. I think about it a lot. It’s no one’s fault - and it’s everyone’s fault. What I’ve learned over these last 16 years is that the system we all depend on for medical breakthroughs needs transforming.
Of course, all of U2FP’s work has been aimed at transforming the pace and quality of curative therapies. We have directed $40M to research through our legislative work; created innovative funding collaborations through our networking ($400K for the Stim/NVG-291 Pig Study at Emory), educated and mobilized our community at our Symposium, in our Podcast, and through our Lab Rats placement program; and pushed for able-bodied and SCI athletes to race for cures together (Team U2FP).
These are impactful programs that have delivered real results, including some return of function in 200+ individuals. But they are just the foundation.
For the last several years I have been meeting privately with investors and stakeholders across the academic, clinical and biomedical sector to develop a plan for what I’ve been calling “The Translation Factory:” an independent institute where scientists, clinical researchers, and biotech entrepreneurs are all working under the same roof.
This ‘factory’ would not be affiliated with any academic or healthcare institutions, because of their competing and often cross-purposed incentives. Could this new entity harness the passion, brilliance and dedication of the many people who want to accelerate robust and meaningful cures for people living with SCI?
Yes, it’s a bold idea. It has to be - SCI is a complex problem that is not being solved fast enough. And that is not to disregard the companies that are working to bring therapies to market. Instead, it is an honest recognition that those therapies will not be robust enough to solve the whole body problem of SCI. We need more and better solutions.
All of U2FP’s transformative work these last 20 years has led us to this vision. It’s a vision that came, maybe inadvertently, from SCI researcher Vance Lemmon’s article, What does ‘Disruptive’ mean? Thoughts on the NIH SCI 2020 meeting.
Above, a slide from Lemmon’s article, “What does ‘Disruptive’ mean? Thoughts on the NIH SCI 2020 meeting.” Click the image to read the full paper.
Here is an excerpt from Lemmon’s paper:
“The SCI 2020 meeting is a wakeup call for the SCI research community. The very large worldwide community of individuals with SCI and their family members are justifiably concerned about the pace of progress….If the SCI patient community wants to use its frustration to accelerate the development of specific therapies, it may want to look at an aggressive top-down approach using a contract research organization model and have all studies done in parallel from the beginning to find robust therapies.”
Maybe it’s time for that solution.
This vision for an SCI Translation Factory is still just that - a vision. Albeit, we have been taking concrete steps and plans are being made. I shared some of our plans with attendees at the ISRT network meeting in London when I spoke there earlier this year. And I’m sharing the idea with you now because we need your support to help make it a reality.
Here are two key ways you can help right now:
- Make a year-end gift to sustain our current programs, which are the small-scale models and transformative stepping stones for the SCI Translation Factory. And then …
- Email me your thoughts and relevant networking contacts (financial, consulting, etc) so that we can collaborate and start working on making this vision a reality.
Join us!
