The Christopher & Dana Reeve Foundation’s long play vision to end paralysis is proving hugely influential in the advance of spinal cord injury (SCI) research and treatment. As a new film documentary reminds the world about the Christopher Reeve legacy, Stephanie Price meets chief scientific officer Marco Baptista for an update on the foundation’s work.
The bold aim of the Christopher & Dana Reeve Foundation is to “cure spinal cord injury”. A decade ago this ambition to end paralysis may have seemed as fanciful as a superhero movie plot. But thanks to the years of dedication and the enduring influence of those that helped to create the organisation that exists today – the late Superman actor Christopher Reeve, the American Paralysis Association that merged into the foundation and the campaigning parents of Henry Stifel, who was paralysed age 17 in 1982 – the mission is very much in sight.
Over the last few decades, the Reeve Foundation has provided over US$140m in funding into spinal cord injury research. Chief scientific officer Marco Baptista tells NR Times: “A lot of what we’re doing with research is to accelerate a really slow process. Device development is slow, drug development is slow.
“It can cost up to US$2bn and take around 12 years to develop a therapeutic. That’s very long and costly. Our strategy is to lower the risk of doing that type of research and lowering the risk for that progression to happen
“If the Reeve Foundation wasn’t there, work that was in an academic centre might not be where it is right now. We want to speed things up and help the research community, which will then help our community that needs new technology and therapeutics.”
Baptista points to the fact that there are very limited large pharmaceutical companies working in the spinal cord injury space, underlining a desperate need for the funding of smaller academic and early stage commercial research projects.
Chief science officer Marco Baptista
“You need academia to have that innovation, to come up with an understanding of scientific mechanisms,” he says.
“The small biotech companies are then moving research along into clinical trials. There are not many big pharmaceutical companies in our field, so what you have is a community of smaller biotech companies, which, by their nature, are going to be restricted with the resources that they have compared to large pharma. A lot of early work that’s usually done is to really understand the mechanism of the therapeutics. For example, if it’s a drug, how potent it is, how selective it is, how the body clears it, what the drug does to the body.”
The foundation, he says, is launching a request for applications which is “open to the world to come and give us an application for their therapeutics that’s maybe missing those types of experiments because they don’t have the resources”.
He adds: “We can support them. So if you’re not exactly clear if your potential drug is really selective against a biological target that you’re going after, then we can support you to understand selectivity, or understand potency, or understand that relationship of what the body does to clear a drug, which needs to be done at some point to be able to conduct a clinical trial.
“That’s a big obstacle in the field that I think the Reeve Foundation is in a unique position to be able to support.
“The idea is really to lower risk, accelerate a slow process, and that should generate more excitement and more confidence for other groups to come in with larger amounts of money.”
Reeve Foundation funding has contributed to innovative technological advances in treatment development in the area of electrical stimulation and brain-computer interfaces (BCIs), or “digital bridges”, which can help spinal injury patients to walk again, for example.
Baptista says: “A good example of innovation is the BCI [which enables] a brain recordings from an implant that sits on the brain. Those are recordings
of one’s thoughts to induce movement, which then get decoded, and then there’s an output. This output could be controlling a mouse or a cursor, but it could also be something very specific to spinal cord injury.
“So that specific type of BCI is extremely exciting. It’s very new. It’s going to take a lot of optimisation, understanding if it’s safe, if it’s tolerable, if an individual is going to properly be able to use it.
“I think that’s really cutting edge right now, and probably the best example of where technology has led us; to the point that movement can hopefully be triggered in a very natural way – having thoughts being decoded in a way that it is natural for movement to happen, so that when you think, your hand moves, or your leg moves.”
One research initiative by ONWARD Medical which is funded by the foundation is investigating electrical stimulation of the spinal cord, leading
to the development of ONWARD’s ARC technology.
The three treatments include: ARC-EX Therapy, a non-invasive stimulator; ARC-IM Therapy, which is an implantable stimulator; and, its BCI, ARC- BCI Therapy.
“You can draw a direct line from really early work that was supported at the academic level, all the way to companies like ONWARD that are developing platforms to help individuals with spinal cord injury,” says Baptista.
“The foundation is part of that journey from A to B. For example, ARC-EX, standing for external, is a stimulator that sits on the skin on top of the spine for stimulation.
“ONWARD has just completed a clinical study called the Up LIFT trial for hand and arm movement, and this is something that we’re anticipating could get FDA regulatory approval, maybe even in the next year.
The foundation is also in partnership with research body the Kessler Foundation and a company called Butterfly IQ, which has developed a portable ultrasound device that helps SCI patients to monitor their bladder volume at home. The device can be used remotely and controlled through a mobile phone by the patient or caregiver.
“The question is, is it possible to use a technology like an ultrasound to more optimally get catheterisation scheduling down based on the needs of your body?
“This potentially could improve quality of life and prevent UTIs, for example. I’m very excited about this project in the collaboration that we’re doing with the Kessler Foundation.”
The Reeve Foundation works to gather feedback and insights to guide investment decisions and which treatments to advance.
“[When] we are evaluating new science, we make sure that people with lived experience are part of our review panels, and are giving us that input that we might be missing because we’re not hearing that perspective if we don’t have individuals living with lived experience,” explains Baptista.
“We also do a lot of patient advocacy work and engaging Congress, engaging with the [US] government, to ensure that holistic approach, so that when this technology does become commercialised, that people are going to be able to use it. We want to advance the technology, but it’s for a purpose and for people to have access to it.
“The point of us being a neutral convener is so important – when we’re talking to Congress, when we’re talking to different stakeholders, we’re not benefiting directly from anything except helping the community.
“We’re a nonprofit. We’re doing this for our community, and we’re not going to shift to another area.
“This is the area that we’re in, and so we’re going to do everything we can to make it work and for collaboration to happen. A good example of what we’ve been doing is what we call the SCI Investor Symposium in partnership with Lineage Cell Therapeutics.
“We’ve created a meeting that you wouldn’t normally see in our field, a meeting where you have companies in the pre-clinical space, as well as the clinical space, key opinion leaders in academia and individuals with lived experience, all in one place exchanging ideas.
“We are going to hopefully do our part, so that the clinical pipeline is as robust as possible and to make sure that we have increased the number of clinical trials. It is also our vision to make sure that these clinical trials are done as smartly as possible.
“As there’s a high attrition rate, a lot of trials don’t meet their outcome for many reasons, but we want to make sure that everyone is learning from those trials so that they can then pivot. What’s going to happen in the future will be more of a combinatorial approach.
“There isn’t going to be one magic bullet that’s going to solve everything because spinal cord injury is very complex. We have a vision of a combinatorial approach, hopefully being successful in the future – there isn’t going to be one cure for everyone, but I think we can be achieving watershed moments of improvements in quality of life for individuals.” •
Study charts rising SCI suicide risk
The number of people with spinal cord injury who have said they have experienced suicidal thoughts almost doubled in the year to spring 2024, according to research.
Figures from the Spinal Injuries Association’s (SIA) ‘What Matters’ survey showed 28 per cent said they had experienced suicidal thoughts, a significant increase from 2023 when only 16 per cent listed suicidal thoughts as an issue that directly affected their mental wellbeing.
Meanwhile, of the 70 per cent who said they had experienced mental health challenges in the past year, 39 per cent said they had experienced suicidal thoughts. Coming to terms with a life-changing injury has huge mental health challenges but, according to the charity, there has been an increase in those who are long-term injured simply struggling to access the vital specialist health and social care they require.
This is negatively impacting their mental health and this worrying trend is reflected in the nature of the calls that the charity receives to its support line with many of those feeling desperate, claiming they have nowhere else to turn.
Although spinal cord injury can often lead to life-long paralysis and/or mobility issues, it’s the loss of sexual function and the inability to control your bowel and bladder in the usual way that are often the hardest things to come to terms with and this is why specialist care and support are vital.
Elsewhere in the survey more than half of people (57 per cent) thought the health and care system does not work for people with spinal cord injury and 42 per cent said they have had difficulty accessing routine and/or diagnostic tests in healthcare settings.
While, with the right support, people can live a fulfilled life following spinal cord injury, and many do, this latest survey from SIA shows too many barriers still exist. Barriers that block people with such injuries from easily accessing the help and support they need. Access to suitably adapted housing, specialist health and social care and sufficient welfare support are vital to be able to live an independent and fulfilled life.
Ruth Hunt, a journalist and campaigner for better mental health provision was eighteen when she sustained her spinal cord injury after a failed suicide attempt.
But years after, when she attempted to take her own life again, the main reasons were due to the lack of practical and psychological help she was receiving to cope with her new disability.
Ruth said: “It’s not just adjusting to life straight after an injury when mental health support is needed but throughout our lives. That’s because concerns about identity, confidence, and sense of purpose carry on long after the initial period following an injury. But such specialised mental health care for those with disabilities is extremely difficult to access.”
This is why SIA has introduced its own counselling and wellbeing service, with qualified counsellors who are spinal cord injured, but demand is huge. They are also sharing specialist expertise with the NHS and recently partnered on a pilot scheme in Southeast England to improve access to mental health services for those with spinal cord injury.
Meanwhile SIA is expanding the number of community groups for those it supports across the country. The charity says informal community-based support can be vital.
One 35-year-old woman described how important this kind of group support is for her mental health and wellbeing: “Living with spinal cord injury means some days can be a fight just to get what you need to live your life and talking to others really helped me find some more strength when I couldn’t cope anymore. I have also made some good friends and we talk online all the time, when
