A few weeks ago, I officially joined the Christopher & Dana Reeve Foundation as their first-ever Chief Scientific Officer or CSO. The SCI community has swiftly and graciously welcomed me into the fold. I’m so excited to begin the challenging, necessary, and long overdue work of translating over two decades of basic research into interventions, treatments and, yes, one day multi-faceted cures for spinal cord injury. I consider this an opportunity of a lifetime. Here’s why.

First, some personal and professional background, which sets up how this once-in-a-lifetime opportunity found me; I received my PhD in molecular and cell biology in 2006 and completed an independent postdoctoral fellowship in 2012, focusing on genetics, disease models and psychopharmacology. Two years later, I founded Perlara PBC, the first biotech public benefit corporation and drug discovery platform company that partnered with rare disease patient advocacy groups to codevelop precision drugs, arm-in-arm. Earlier this year, I made the difficult decision to wind down day-to-day operations at Perlara when the company, which had grown (in retrospect) quickly, overdrove its headlights and was faced with sudden and unforeseen financial circumstances.

In the spirit of transparency and patient-centricity that guided every decision I made as CEO, I refused to let all the blood, sweat and tears my team and our highly motivated community partners poured into the company be in vain. So, I open-sourced the data and discoveries of the company’s lead program for the congenital disorder of glycosylation NGLY1-CDDG, including a repurposed drug that is heading to the clinic with public funding. The company’s second most advanced program for PMM2-CDG, another glycosylation disorder, led to a second repurposed drug also heading to the clinic because the family partner refused to quit.

My major learning from Perlara is that highly motivated patient communities are incredible forces of nature not to be underestimated. I knew my next move professionally had to be a patient-inspired and patient-partnered adventure. I turned to the place where I first engaged with patient communities for help figuring out what to do next. That place was Twitter. Word spread and, within a few weeks, I was contacted by Peter Wilderotter, President and CEO of the Christopher & Dana Reeve Foundation. To my astonishment, he and others at the Reeve Foundation had been following mine and Perlara’s journey on social media for several years.

When I first took the call with Peter, I was excited and a bit terrified. Was I the right person for the job given that I don’t have a personal connection to SCI and didn’t train in a SCI lab? Peter shared the Foundation was in the process of a transformative shift to restructure its research programs. The first step was to hire the first-ever CSO to develop a strategy around venture philanthropy that will usher the most promising SCI discoveries and devices to the clinic. Based on my experiences in company formation and transitioning from academia to biotech, as well as my very public commitment to working alongside patient communities, I began to feel that maybe I was the right person for the job after all.

As an outsider, I approach the science of SCI not only with fresh eyes but also without blind allegiances to one particular therapeutic strategy or entrenched school of thought. For those same reasons, I felt compelled to win the trust of SCI researchers and community members who devoted their careers and lives to the Reeve Foundation mission of “today’s care, tomorrow’s cure.” Prior to accepting the role, I set out on a listening tour over the spring and summer, flying to places like Seattle and San Diego and Milwaukee to meet face to face with prominent SCI researchers. Through these conversations, I quickly overcame my imposter syndrome, even though I’m still learning more every day.

Fast forward to this week, I arrived at Reeve HQ in Short Hills, New Jersey, for my first onsite visit. On my way out one evening, I took a picture of Christopher Reeve’s chair with my iPhone and with my mind’s eye. This image is now seared into my visual cortex. It will serve as my daily reminder of how far the SCI field has come and the distance we still have to travel to fulfill our mission. As I hope I’ve demonstrated with my leadership at Perlara, when I make a promise to a community, I intend to keep it.

My door is open to the entire community, not just scientists. I want to make that abundantly clear from the outset. You can find me on Twitter at @eperlste and my email is [email protected].

Now, let’s get to work!