Forty years ago, spinal cord injury (SCI) was viewed as an intractable problem due to the belief that the spinal cord was incapable of repair or regeneration. But in many ways, this was a self-fulfilling prophecy since researchers lacked the funds to rigorously test the hypothesis. As a result, researchers found themselves stuck in a kind of philanthropic no man’s land, unable to move the field forward because funders believed the field couldn’t be moved forward.
Thankfully, grantmakers like the Christopher & Dana Reeve Foundation stepped in to challenge conventional wisdom. Originally founded in 1982 as the Stifel Paralysis Research Foundation, the foundation was renamed in 1999 after actor Christopher Reeve, who became quadriplegic as a result of a horse riding accident, and his wife Dana. Since 1982, the Short Hills, New Jersey-based foundation has disbursed over $140 million toward SCI research, including support for what may become the first FDA-approved treatment in the field.
“The spinal cord injury field has been quoted as being ‘the graveyard of neuroscience,’ which is a horrible term,” said Reeve Foundation Chief Science Officer Dr. Marco Baptista. “But thanks to the foundation, that is no longer the case.”
In addition to its SCI research support, the foundation has also disbursed over $37 million through its Quality of Life Grants Program to 3,550 nonprofits in all 50 states that foster community engagement, improved access and independent living for individuals and families impacted by paralysis. In August, the foundation launched two new grant programs, Racial Equity and Rural Unserved & Underserved Populations, to fund projects that promote racial equity for people living with paralysis, and projects that benefit people living with paralysis in communities that are racially diverse and/or historically underserved.
“Our community members cannot access society because of living with paralysis,” the foundation’s president and CEO Maggie Goldberg told me. “It’s challenges of transportation, of work, of living in constant pain — the list goes on and on. So we see our mission as a melding of care and cure to allow people to go back to work, have families and become active members of society.”
“The cause found me”
In 1982, a New Jersey teenager named Henry Stifel was in a car accident, leaving him paralyzed from the chest down, which prompted his father to launch the Stifel Paralysis Research Foundation. A few years later, the foundation and the American Paralysis Association (APA) merged under the APA name. Reeve turned to the APA for support after his accident in 1995. In 1999, the APA and Reeve’s foundation became the Christopher Reeve Foundation. Reeve was a tireless advocate for SCI before his passing in 2004. Dana’s name was added to the foundation’s moniker after her death two years later.
According to the foundation’s Form 990 for the fiscal year ending December 2020, it had $8 million in total assets, $14 million in total revenue, and disbursed $5.6 million in grants for activities like research, nursing home transition and addressing social isolation during COVID-19.
Goldberg’s connection to the Reeve Foundation is a deeply personal one. She broke her neck in a car accident at the age of 16 and made a full recovery. “I was very lucky to not have neurological damage,” she said. “As Christopher once said, ‘the cause found me.’”
Goldberg spent her early career working on Capitol Hill before joining the foundation in 2000. She left 13 years later to work at New Jersey’s Morristown Medical Center. Goldberg eventually returned to the Reeve Foundation, where she oversaw the National Paralysis Resource Center and served as chief operating officer. The foundation named Goldberg its new CEO last fall after a national search.
Baptista has a background in behavioral neuroscience and previously worked in the pharmaceutical industry. He told me that it was during this period that he “saw what nonprofits can do in helping industry move their programs forward.” He then made the jump to the Michael J. Fox Foundation for Parkinson’s Research, where he spent 10 years interacting with his former industry colleagues to move therapeutics through the clinical pipeline. This spring, the Reeve Foundation named him its chief scientific officer.
Ongoing challenges
While the SCI research field has made astonishing progress over the past four decades, Baptista underscored the immense difficulty in bringing promising central nervous system (CNS) treatments to market. “I’ve seen numbers that [show] under 9% of CNS programs that make it through clinical trials actually get regulatory approval,” he said.
And in what may come as a shock to some readers, Baptista pointed me to a September 2022 Frontiers in Cellular Neuroscience report which stated that despite the fact that a “large number” of clinical trials have been initiated to improve the lives of individuals with SCI, “there remain no FDA-approved treatments that can even partially improve neurological dysfunction after injury.”
Baptista and Goldberg attributed this reality to the inherent complexity and heterogeneity of SCI. “It’s not going to be one single device or one single pill that is going to provide the cure,” Baptista said. “It’ll likely be a combinational approach to deal with a very complex injury.”
But many promising treatments — SCI-related or otherwise — never even make it to the regulatory approval stage. Instead, they wither away in what researchers (employing another strongly worded metaphor) call “the valley of death” — a failure point in the research continuum where a lack of funding or an unclear path to commercial use precludes researchers from assessing how a treatment can improve outcomes outside of a clinical trial. It’s at this point that medical research funders frequently intervene to shepherd languishing treatments through the pipeline.
“That type of translational challenge is not unique to SCI, but it’s definitely something that needs to be addressed,” Baptista said. “Sometimes, a gap may exist in our knowledge base, like within an academic group that’s advanced the science, and to really translate it, you’re going to need some industry expertise to help move it across the finish line.”
Compounding matters is the fact that researchers aren’t incentivized to collaborate. In academia, researchers’ quest for tenure often hinges on publishing new work, so they can be disinclined to preemptively share what may be groundbreaking findings with peers. Meanwhile, pharmaceutical companies, with a keen eye on the bottom line, are reluctant to pass along valuable intellectual property to competitors.
Going all-in on collaboration
The Reeve Foundation is navigating this terrain by carving out what Baptista calls a “pre-competitive space” to incentivize collaboration between stakeholders, including grantseekers. For example, he and his team are working with the Open Data Commons to incentivize researchers to add data to the repository. “A big push for us is to see that all the data sees the light, so we’re not in a situation where people are doing work that has already been shown to not be promising because they don’t have access to the data,” Baptista said.
Traditionally, researchers have been pretty protective of their data, but the tide seems to be turning. Baptista noted that beginning next year, the National Institutes of Health (NIH) will require grantseekers to place data in a publicly accessible repository. “I’m starting to see the culture change a bit, and I think we can even push it further,” he said.
The foundation also formed the North American Clinical Trials Network (NACTN), which supports a cohort of 10 clinical centers, as well as clinical coordinating, data management and pharmacology sites, all dedicated to establishing best practices in the care and treatment of SCI.
The NACTN maintains a registry of information for over 800 acutely injured patients. The idea here is that researchers can conduct more efficient clinical trials with fewer participants, since the patients in the registry double as a virtual control group. “Instead of having 100 people in the trial, now you could have maybe 40 individuals, because you’ve been collecting all of that data,” Baptista said.
Baptista ultimately envisions the Reeve Foundation as a “neutral convener for collaboration to connect the dots so that translation can actually happen. It’s going to take individuals living with SCI, academic research and industry all working together to get to transformative treatments,” he said.
“As much inclusion as possible”
Readers may know that IP has published over two dozen State of American Philanthropy briefs exploring key trends in fields like global health, arts and culture, and criminal justice. I just wrapped up a draft on giving for cancer research, and a major takeaway was funders’ commitment to boosting diversity within clinical trials.
I spoke with Goldberg and Baptista to gather information on an upcoming brief on giving for neurological research and they were very much on the same page as their peers in the cancer field. “Conducting the best science means that you’re trying to capture as much inclusion as possible,” Baptista said. “So something we’re thinking about for future grants, especially if it’s a clinical trial, is making sure that the trial is being run optimally, which would mean how to best generalize a study so it applies to the entire population.”
For the Reeve Foundation and other medical research funders, this also means spreading the word to community members via email lists and social media. “We want to make sure when there are trials, we are encouraging underserved populations to participate,” Goldberg said.
In addition, funders are working to understand how underlying economic and social issues contribute to health disparities. This issue is particularly acute when it applies to minorities living with disabilities, a demographic that, according to a mid-September report from the U.S. Department of Health and Human Services Advisory Committee on Minority Health, faces a “double burden” that involves inadequate access to quality healthcare, profound health disparities including disproportionate rates of mortality, and other factors.
This is where the foundation’s new Racial Equity and Rural Unserved & Underserved Populations grants look to move the needle. Goldberg said the grants are “not only about access to inpatient and outpatient care, but also addressing the challenges that these individuals face once they’re out in the world and navigating their lives.” The online application submission deadline for the grants is Thursday, October 13.
Promising treatments on the horizon
I asked Baptista and Goldberg what advice they would give to any neurological research organizations seeking funding. Baptista stressed the importance of collaboration and looking across the field to see if specific treatments could be repurposed for the organization’s area of work. Grantmakers are always keen to “fast-track something if it’s already been shown to be potentially safe for another population,” Baptista said.
Goldberg encouraged organizations to effectively document how their work is moving the field forward. “Spinal cord research is still a relatively nascent field,” she said. “Forty years really isn’t a long time, so it’s naturally important to show any gains that have been made.”
In fact, 2023 is poised to be an exciting year for the SCI field. Goldberg noted that the Reeve Foundation has provided support to ARC Therapy, a form of treatment developed by the Swiss company ONWARD that stimulates the spinal cord to restore movement and other functions in people with SCI. In January 2021, the company started enrollment in the Up-LIFT Study, a clinical trial to evaluate the effectiveness of ONWARD’s ARCEX system in restoring hand and arm function. Goldberg is hopeful the FDA will approve the system next year, thereby ending a 40-year streak in which the agency hasn’t approved a single treatment to improve neurological dysfunction after injury.
“The research that we’re funding has the ability to impact other areas like strokes, and hopefully Parkinson’s and ALS,” Goldberg said. “It’s research that enables people to become more engaged members of society.”