A Conversation with Board Chair Jay Shepard and his Daughter Ellie

Posted by Reeve Staff in Daily Dose on February 10, 2022 # Lifestyle

Ellie and JayIn 2015 Ellie Shepard sustained a C6 spinal cord injury in a diving accident. The experience inspired her father, Jay, a biotech/pharmaceutical industry executive, to get involved with the Christopher & Dana Reeve Foundation, of which he is now Board Chair. Here, Ellie talks to her dad about his reaction to her injury, why he chose the Reeve Foundation, and why he's feeling more optimistic than ever about the future for people with spinal cord injuries.

Ellie: What were your thoughts on the day of my injury?

Jay: The day of the accident, your friend called us at midnight and told us you'd been injured. We assumed it was probably just a broken bone. When we showed up at the hospital, we were told you had a spinal cord injury. I didn't believe it, didn't accept it. When the doctor told me you'd likely be in a wheelchair for the rest of your life or a good part of your life, I didn't believe that either. I was in complete denial and then absolute terror. I'll never forget the sound of your cries or your mom falling to her knees sobbing. We had no idea what the road ahead would be. We could only wrap our minds around the immediate next step, so we called doctors all over the world to be sure that the emergency surgery you'd have that morning was the right call – which it was. Soon after, I connected with the Reeve Foundation, which was also the next right step.

Ellie: How did you find the Reeve Foundation, and what was your first interaction with them?

Jay: I felt massively overwhelmed. So I started searching the internet for answers, and I thought, "who can I call that can help me?" Then I remembered the Christopher & Dana Reeve Foundation and felt a gigantic instinct that should be my first call. I knew that the Reeve Foundation was the go-to resource for spinal cord injury. Within just a few hours after reaching out, the Foundation triaged me to a patient family support person. I was so excited to be talking to this person– this was the only place I could turn to find someone who truly understood our situation.

The immediate help was around what kind of physical and occupational therapy you should get. They also put me in touch with a peer mentor, someone actually living with an SCI, who had been through a similar experience. He helped me get my head around what had just happened and other things I didn't even know I needed help to handle. We started talking about life after spinal cord injury, and he reassured me that he still does so many everyday things, just differently than before his spinal cord injury. I remember feeling overwhelmed in a positive way. I could see that there was light in this dark moment. I felt like I was taken under the wing by a group of people I didn't even know. They were so compassionate and thoughtful and remarkably helpful. I went into this experience terrified but came out of these conversations with hope and faith and couldn't wait to get back to the hospital to share the reassurances I had found that life would be good – different, but good.

Ellie and JayEllie: At what point did you start getting interested in some of the technological or research components associated with spinal cord injury?

Jay: The first thing I wanted to know when you were injured was what kind of therapies are available? As a 40-year veteran of pharmaceutical development – and your mom was a nurse – our minds went directly to research. At the time, there had been early signs of breakthroughs that are now being further developed with Reeve's support of The Big Idea study and companies like Onward, which are conducting human clinical trials of neurostimulation and epidural stimulation. I was super hopeful when I started reading and hearing about those possibilities. But I also quickly realized that the field of spinal cord injury research requires global scientific coordination to achieve our goal of cures. The Reeve Foundation is helping lead this charge. Four decades ago, spinal cord injury was considered the graveyard of neuroscience, but today – in large part because of the Foundation's work – it is widely acknowledged that promising combinatorial therapies will change what it means to be living with paralysis. Advancements have been made, and real cures are possible, but we need to bridge a significant investment gap to bring these potential therapies along the research continuum and into the marketplace.

Ellie: What makes the Reeve Foundation special to you?

Jay: The Reeve Foundation has invested 40 years and more than $140 million into spinal cord injury research, and now our focus is on taking our successes and supporting the science that is being translated into patients—in other words, giving them a therapeutic product. We say in the biotech world "from bench to bedside," meaning moving science from early-stage lab work and directly to patients. The Reeve Foundation is uniquely able to do this because of our reputation for funding the brightest minds and most promising ideas and because of our close ties to the community. As a result, the Foundation can facilitate access to tens of thousands of patients and other like-minded organizations in the spinal cord injury and paralysis arenas. We all want to do the same thing, which is to speedily move spinal cord research forward and fill the current translational gap.

I'm especially excited about this because I believe we're at a pivotal moment. Scientists are beginning to finally crack the code in the sense that they've got people moving limbs that haven't moved them for years, some of them for decades, through such innovations as neural stimulation where an electrical current is delivered into someone's spinal cord. Researchers are learning so much about how to stimulate that autonomic nervous system, which will have huge advantages.

The Reeve Foundation is also the only organization with a dual mission – so while we're working hard toward the cures of tomorrow, we are also committed to ensuring the best quality care today. The Reeve Foundation is there for our family and hundreds of thousands of others to navigate this complex condition – whether someone is just diagnosed or has been living with paralysis for decades. In addition to providing free and comprehensive support resources, the Foundation is also an advocate for disability rights and equality. It is raising awareness of the myriad issues this community faces – such as the lack of quality home caregivers – and is working tirelessly to address such challenges.

Ellie: Where do you see the Foundation in five years?

Jay: Each day, the Foundation is laser-focused on achieving our mission to cure spinal cord injury by advancing innovative research and improving the quality of life for individuals and families impacted by paralysis, and we won't rest until we do.

But we can't do it alone. We need partners and the community – from those impacted by paralysis to the scientists working toward cures -- to join us, to boldly believe in our cause and keep pushing forward. The Foundation has for over 40 years made tremendous progress in understanding the biological mechanisms of spinal cord injury and paralysis. In addition, through the National Paralysis Resource Center, created 20 years ago, we address the physical, emotional, and mental tolls of paralysis. Together, we have an opportunity to build on these legacies.

When people like you and I, Ellie, join Reeve – through advocacy opportunities, participating in the many events that Reeve offers, donating, and more – there are no limits to how far we can go together to change what it means to be living with paralysis.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.