A conversation with Christopher & Dana Reeve Foundation CEO Maggie Goldberg
There are phrases and sayings that aptly convey the importance of community in clinical research. From “it takes a village” to “a rising tide raises all boats,” there’s no shortage of ways to iterate the importance of working outside oneself.
For the Reeve Foundation, nothing could be truer. In its unending quest to discover and develop life-altering cures and therapies for people living with spinal cord injuries (SCIs), the Foundation has partnered with just about every type of organization imaginable. From academia to medtech startups to pharma, the Foundation emphasizes the importance of teaming up for the cause.
Here, CEO Maggie Goldberg discusses the Foundation’s partnership approach — from how partners are identified to what each sector brings to the field of SCI to how partnerships are evaluated for effectiveness.
Clinical Leader: The Reeve Foundation focuses on academic and industry collaborations as part of its approach to treating and curing SCI. Why is collaboration so important to SCI research?
Maggie Goldberg: I think the misperception with SCI is that people think the crux of the problem is that you're injured, and you can't walk again. But every spinal cord injury is unique. But addressing the quality-of-life issues that are a consequence of SCI is just as important — extreme pain, loss of autonomic functions, such as bowel or bladder control, blood pressure control, sexual function, or the ability to sweat. All of these contribute to the combined insult that encompasses spinal cord injury, which is why we think it's so important to work with diverse partners to find cures and treatments to help people improve their quality of life.
Who was the Foundation’s first partner, and how did that relationship develop?
In the early 2000s, the Reeve Foundation identified neurostimulation, also known as epidural stimulation, as a highly promising area of research. This programmed stimulation of the spinal cord has the potential to restore movement and other functions. As the science took shape, Reeve-funded lab work led to the creation of an early-stage biotech called NRT. With the Foundation’s unique knowledge of research and expertise in critical aspects of the field — technology, regulatory, market opportunity, IP, and costs — Reeve became an investor in NRT, which is known today as ONWARD Medical N.V., a medical technology company creating innovative therapies to restore movement, independence, and health in people with SCI. ONWARD has been awarded nine Breakthrough Device designations, highlighting the company’s innovative approach to developing therapies for people with SCI. Our end-to-end support for this work represents a modern approach to nonprofit-industry partnership.
Aside from its financial contributions, how does the Reeve Foundation support a partnership?
The Reeve Foundation's philanthropic commitment to scientific research is one piece of a holistic approach that we strive to bring to the complex puzzle of SCI “cures.” Another aspect of our work that we consider crucial is our ability to serve as a convener. We're an unbiased partner, with the capability to bring together key players across the ecosystem — from regulatory bodies to healthcare professionals to the patient community and others. We ask questions like, “What's it going to cost? How do we get Congress to understand that this needs to be covered?”
We also offer access to our community members living with paralysis. It is vital that the community has a voice in the clinical trial and R&D processes. It’s important that researchers and others don't assume and instead hear directly about the community’s experiences and needs: “I want my hand function back. Without improved bowel and bladder function, I keep ending up in the hospital with UTIs. I want my autonomic dysreflexia to disappear.”
The Foundation also partners with AXONIS Therapeutics, which is developing an oral therapeutic. The approaches and the outcomes are markedly different from those at ONWARD. Why is it important to explore both treatments and cures?
It goes back to what I said earlier that no spinal cord injury is the same. We don't know what it's going to take. It's likely going to be a combination of treatments and personalized approaches. That could be a device plus a drug plus physical therapy. So, it's really important that we diversify our funding to tackle this complex injury from different perspectives.
You also partner with the North American Clinical Trials Network (NACTN) to leverage its patient registry. What significance does a patient registry carry for the Foundation?
To accelerate drug discovery and device development, in 2006 the Reeve Foundation launched the NACTN, a consortium of neurosurgery departments at hospitals across the country that provides a crucial launchpad for coordination and collaboration. NACTN has member investigators at university and military centers in the U.S. as well as Canada and has contributed significantly to improving care, primarily acute care of patients sustaining traumatic SCI.
Its accomplishments include a clinical registry database of more than 1,000 acute SCI patients that has helped us better understand epidemiology, design more effective clinical trials, elucidate the heterogeneity of the injury, and understand the impact of complications on the outcomes of SCI. NACTN works to bring promising therapies out of the laboratory and into clinical trials, in a manner that provides strong evidence of effectiveness and safety.
Again, it goes back to collaboration. We have these brilliant neurosurgeons all over the country who are working together, sharing information, data, resources, and knowledge. By uniting these experts, NACTN is gathering valid, meaningful data to speed the delivery of new therapies to the community.
So far, we’ve detailed relationships with industry, but you also have agreements in academia. Tell us more about those and the value they bring.
We're focused on open data sourcing right now. Right now, we're providing a grant to the University of Alberta, for example, and providing an expert to help researchers make their data more accessible via the SCI Open Data Commons. Open data is something that the NIH is mandating with its grant-funded projects, and we're now mandating it as well. If an organization receives a grant from the Foundation, we require that the resulting data be open-source.
That sounds like a new development. How did that come about?
Chief Scientific Officer Marco Baptista joined us — he was new to spinal cord injury but not new to the field of neuroscience — and said, “We've got to create incentives for both academics and as an industry to have success. We've got to fix this problem of people not sharing information to help facilitate the field.” Open data support and requirements are one strategy to that end. Another strategy, again, is serving as a galvanizing force within the field – such as via the inaugural SCI Investor Symposium, which we co-hosted this past June to bring together SCI industry and academic leaders and people with lived experience to discuss advances and future trends for treating SCI. We’re committed to helping facilitate knowledge sharing at every stage and across the field.
Working with the right partner at the right time is essential. How does the Foundation identify a potential partnership?
Over the course of each decade, the Reeve Foundation and our research partners have redefined the boundaries of what was once considered unachievable for spinal cord injuries. As we continue to build alliances to bridge the gap between lab discoveries and successful clinical translation, SCI research is entering a new era where we collectively can anticipate tangible solutions for those living with paralysis.
Our research program includes a three-pillar approach designed to “Energize,” “Educate,” and “Catalyze” the field. For example, the Foundation and Lineage Cell Therapeutics, Inc. recently hosted the first-ever SCI Investor Symposium in La Jolla, CA, an initiative that falls under the “Energize” pillar. The idea was to share information with and from academic and industry researchers on topics ranging from patient registry to clinical trial recruitment to what's working and what’s not working in drug development. We used the opportunity to explore the SCI therapies market, as well as companies’ business plans, their IPs, and conversations with the FDA.
Through industry collaboration and events like this, we are linking critical communities, including academics, scientists, industry members, and individuals impacted by SCI. By bringing everyone under one roof, Reeve is helping generate new partnerships to increase innovation.
Once both parties have agreed to partner, what steps are taken — financial, legal, and otherwise — to make it official?
Each arrangement varies, but in every partnership, we have a written contract. Many are milestone-based; others include placing a Reeve Foundation representative on the company’s executive or scientific advisory board or placing our research consultants with industry CEOs, R&D teams, and others to exchange ideas. There is no one template for how we partner. Rather, we co-create partnerships that address the unique skills, needs, and attributes of our respective organizations.
Once the relationship is established, what are some ways to ensure it will be successful for and beneficial to both parties?
Regular communication is vital. We ask our partners to tell us what's happening, good or bad. We ask them if there they’re encountering any roadblocks — we want to be close partners, problem-solving together. Dr. Baptista works closely with our partners and our board of directors to facilitate successful engagements.
Just recently, Dr. Baptista and I visited a partner lab in Switzerland because there’s no substitute for face-to-face meetings. It's just a different vibe where we can really dive in together. The experience is so much deeper than what can be gained from calls and written reports. From observing mouse-model surgeries to speaking with real people participating in clinical trials — that level of engagement is irreplaceable and essential to success.
If industry would like to partner outside of its network, what are your tips for identifying and making contact with those potential partners?
I would ask them, “What are you ultimately trying to achieve?”, and then pair that with our priorities and perspective. If we were going to announce this partnership, how would the community respond? What's the benefit to our community, making sure that there is real mutual benefit beyond brand associations or funding?
At the end of the day, it's all about our community members living with paralysis. So, what are you doing to help them have an improved quality of life? Also, are you doing anything that no one else is doing? Or are you doing it better? And what's your timeline? Because you don't want to talk to someone who will say, “Well, you know, 10 to 20 years. We're fast-tracking, focusing on ‘high risk, high reward.’”
Finally, I ask myself, “What would happen if we didn't partner?” We're looking at funding two specific projects right now that if Reeve doesn't do it, no one else will. And that's a really compelling reason for us.
About The Expert:
As president and CEO of the Christopher & Dana Reeve Foundation, the leading paralysis organization dedicated to care and cure, Maggie Goldberg drives strategies to improve the lives of those impacted by paralysis. Maggie has dedicated over 20 years to the Foundation, providing the leadership, management, and vision necessary to strategically grow the organization and fulfill its mission. She also oversees the Foundation’s National Paralysis Resource Center. Maggie brings to this role personal experience. She experienced a C2 injury at 16 years old and recovered fully, but her experience set her on a path to work on behalf of the paralysis community. A graduate of the University of Pennsylvania, she joined the Reeve Foundation in 2000, overseeing communications for the Reeve Foundation for 13 years before becoming vice president of policy and programs in 2014 and chief operating officer in 2019. Maggie started her career in Washington, D.C., working for Witeck Combs Communications, Feld Entertainment, and U.S. Senator Arlen Specter.