Advancing Collaboration with the Christopher & Dana Reeve Foundation 

About the Organization

We are dedicated to curing spinal cord injury by advancing innovative research and improving the quality of life for individuals and families impacted by paralysis. Christopher Reeve put a human face on spinal cord injury and had an unrelenting drive to pursue the best research in the world. It was his vision, his passion, and his brilliance that attracted young scientists to take on the cause and advance the field of spinal cord research. And while Dana was universally known as the model for caregiving, her real legacy is the creation of our Paralysis Resource Center that has reached so many of those living with paralysis and their families with life-changing resources.

Featured Guest
Peter T. Wilderotter
President & CEO
Christopher & Dana Reeve Foundation

Approach to Collaboration

The history of the Christopher & Dana Reeve Foundation is rooted in collaboration. We view partnerships as essential for the sector to succeed and are in a unique position as both a funder and a recipient of funds.

Our organization was started when a young man in Short Hills, New Jersey, was paralyzed in a car accident, and the community rallied  to support him. Then known as the American Paralysis Association (APA), the organization’s research was primarily focused on the cure side of the equation. When Christopher Reeve was injured, he was well-known for wanting to walk again. He started his own foundation to accomplish his goal. Soon after, APA merged with him to form the Reeve Foundation.

While Christopher was consumed with finding a cure, his wife Dana wanted to focus on care. Initially, APA was worried that this would diminish the ultimate mission. Both sides had to come together and work through their respective needs and concerns to succeed in collaboration. We carry the same ethos with us today and prioritize effective communication and transparency in all of our collaborations.

Build Trust

There are steps organizations can take prior to establishing more robust types of collaborations that can establish trust for both sides. We recently merged with Alan T. Brown Foundation, which has a venerable 20 year history. The Brown Foundation was founded by the parents of a gentleman who was injured who were very focused on the care side. The Foundation and its founders have been our colleagues in the field for quite some time and discussions of a merger percolated for about six years. During this time, we brought on the young man who was injured as a key part of our staff, and in so doing, we were able to develop a relationship that ultimately led us to achieve the required level of trust that enabled our Foundations to formally come together.

Have a Vision

We are audaciously trying to create collaboration for the entire field with respect to spinal cord injury research. Success can’t be achieved in a silo, and we know we can’t do it alone. To that end, we prioritize a grand vision in which we are able to convene and help mobilize our sector to achieve scientific success collectively.  

Seek to Assure the Success of Your Collaborators

We always seek to align with the needs of our donors. In the same way, when exploring potential partnerships -- with other philanthropic organizations or research entities -- we strive to listen to their needs and understand how we can make their experience better. We seek to assure their success. Sometimes it’s easy to think there’s a finite number of things we can do, but we must step back and ask, “What if what we can do together is infinite?”

Take Stock

Not every collaboration succeeds. In instances where we’ve failed, we often didn’t recognize potentially great partnerships. On the other hand, we’ve also learned we can’t be too eager, or we could overlook the possibility of merging with an organization that is struggling. Few organizations in our space carry out a SWOT analysis regularly; we believe it’s important to take stock of where we are and consistently renew our analysis.

Start Small

As a foundation, we give away about $2 million in quality of life grants to small and deserving organizations. Grants fall into four categories: Direct Effect, High Impact Priority, Expanded Impact, and High Impact Innovative Assistive Technology. These grants allow the opportunity for us to develop relationships with these organizations that may grow over time. Conversely, we also seek partnerships with big-name organizations, such as Google. For mega-name partners, our collaborations may be considered small-scale, but for us, they are monumental. 

Fail Fast, and Build Rigorous Feedback Loops

When a collaboration falls short, there are lessons. For the Reeve Foundation, we’ve learned about the importance  of creating feedback loops and also about jumping into a collaboration too quickly before all of the details have been ironed out. There’s also a lesson in allowing room for mistakes in a sector that rarely allows itself to fail.  

Take a Portfolio Approach

As we convene experts in the most promising scientific approaches to spinal cord injury and rehabilitation -- the roadmap to a cure  -- we emphasize the value of a portfolio approach. Multiple opportunities and avenues exist, and we must be clear about priorities. Since a cure doesn’t exist right now, we want to assess what each approach brings to the table that might help us all achieve our common goal. The notion of running our existing programs while we innovate may seem daunting, but the best way to innovate is to work with others. 

Consider Non-traditional Partners

On the research side, we work with individuals and organizations that aren’t in the spinal cord space. We incorporate learnings from other fields, such as the work taking place around cystic fibrosis, and best practices from such venues as FasterCures.

One of the lessons we acquired after Christopher’s passing was that donors loved and were inspired by him, but they did not believe he would walk again. We’ve been working with Postpartum Support International, which, sadly, shares with the Reeve Foundation a challenge in that people often feel an emotional response to our cause that causes them to turn away.

We also went to Hollywood, which wasn’t a natural partnership for us, to raise their awareness of our community and improve the way that the industry portrays living with paralysis.

Keep Your Donors Apprised of Your Collaborations

We believe that keeping funders appraised of our collaborations expands our reach and our impact. We’re trying a grasstops strategy by collaborating with our donors, who have relationships to other larger funders. Incorporating our donors ensures our decisions aren’t limited by narrow interests. Through these relationships, we’re sharing discovery and research. 

Future Collaborations

It’s interesting to picture a futuristic cure that involves artificial intelligence and robotics, and perhaps Elon Musk at the forefront with us. We would love to work with him because our problem is an imminently solvable one. In that way, we can take something seemingly hopeless in many eyes and change their perception so that we create hope for a cure that can happen in time.

This article was composed by Rachel Romana Liu.

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