The maverick movement to cure spinal cord injury - Red Bulletin cover story
Recent scientific developments have shown remarkable recovery in patients with spinal cord injuries. Three people share how this research is transforming lives and could one day deliver a cure.
On a sunny day in 2017, Ed Jackson – a 6'4" pro rugby player – was at a barbecue at a family friend’s house and took a dive into their pool. Only when his skull smashed against the bottom did he realise it was the shallow end. “I tried to reach for my head to check for blood,” he says, “but I couldn’t move. I panicked.” Jackson was drowning. His dad, realising something was wrong, raised him up. The ambulance journey to hospital took more than two hours because Jackson had to be resuscitated three times. He needed emergency surgery to stabilise his spine. “My dad never looks worried, but he was concerned. I knew this was a life-changing incident.”
Jackson had dislocated his C6-C7 vertebrae and shattered the disc, sending shards through his spinal cord and leaving just 4mm still connected. He was told he’d never walk again. “This is something that happens to other people, never you,” he says. Distraught, Jackson kept apologising to his partner, Lois. At night, he’d imagine his toe wiggling. Then, on day six... it did. The impossible was happening. “Before this, winning championships would make me happy; suddenly a wiggling toe meant so much more.”
The former Newport Gwent Dragons and England youth number eight underwent rehab and hydrotherapy, treasuring every millimetre of new movement. A year later, he stood weeping on the 1,085m-high summit of Snowdon after a gritty eight-hour hike. “To think where I was... it was a ‘pinch me’ moment. That feeling became addictive.”
The 31-year-old from Bath has since climbed Meru Peak (6,600m) in the Himalayas and co-founded the M2M (Millimetres to Mountains) Group, which arranges hikes and events for those with disabilities. Still lacking power down his left side, he walks with a brace and a heavy limp. “Because of my inefficient mechanics, I use 50 per cent more energy. In Nepal, I burnt 11,000 calories a day.” This year, he will climb Mont Blanc (4,808m) in the Alps, Gran Paradiso (4,061m) in Italy, and Himlung Himal (7,140m) in Nepal. He hopes to become the first quadriplegic to summit Everest (8,848m).
Jackson is one of more than 2.5 million people worldwide to have suffered a devastating spinal cord injury (SCI) – a uniquely complex condition for which no known cure exists. SCIs are usually caused by road accidents (50 per cent), falls (24 per cent), violence (17 per cent) or sports (nine per cent). Men are most at risk in their twenties and women in their teens – when they are most active – as well as in older age.
The prognosis is bleak. Typically, 53 per cent become paraplegic (paralysis of the legs and trunk) and 47 per cent quadriplegic (all four limbs and trunk). With ‘incomplete’ injuries (partial loss), studies suggest anywhere from 20 to 75 per cent might regain basic walking capacity. But with ‘complete’ injuries (full loss of movement and/or sensation), only 10 to 20 per cent regain any sensory function within a year, and restoring movement is rare. As a recovering quadriplegic, Jackson’s progress is astonishing.
But some are proving they can enjoy life despite the limitations of their current circumstances. The Paralympic and Invictus Games have showcased the power of disability sport, and others are now chasing adventure and adrenalin instead.
Ben Tansley, a tattooed gym owner from Norfolk, broke his T4 vertebra and suffered paralysis below the chest when a fellow biker hit his motorbike in 2017. “The doctor said, ‘You didn’t break your back, you exploded it,’” recalls Tansley, 34. But his wheelchair doesn’t stop him kayaking, lifting weights or planning epic challenges. “After reading that [Ross Edgley] did a triathlon carrying a 45kg log, I dreamt I did a wheelchair marathon with one,” he laughs. “I’m impulsive, so at 2am I started looking for a charity marathon. I’ve now got the log.”
Tansley – ‘Tano’ to his friends – has already tackled the Berlin wheelchair marathon (in 2018). For another charity challenge, he plans to hand-climb (wheelbarrow style) the 2,744 steps of the Manitou Incline – an abandoned funicular railway near Colorado Springs – with a mate holding his legs. “I just want to surprise people and show what you can do with a positive mindset.”
Nathalie McGloin was just 16 when, as a passenger in a car crash, she broke the C6-C7 vertebrae in her neck, leaving her paralysed from the waist down. She is now the world’s only female quadriplegic racing driver, piloting an adapted, hand-controlled Cayman S in the Porsche Club Championship. “The adrenalin is part of the appeal, but I also get to race alongside able-bodied people,” she says. “I’d never had that parity since my injury. But all that matters here is your skill and bravery.”
During her traumatic time in hospital, McGloin focused on “surviving each day” and “just dealing with being a teenager while coping with my new ‘broken body’”. Some days, she wanted to die. But now the Northampton racer talks excitedly about her first win at Silverstone – “I’d never taken the flag, so I didn’t know what to do” – the joy of racing in the rain, and hitting that perfect sweet spot between speed and control: “I call it ‘driving on the edge’.”
Arriving at our photoshoot, these three pioneers share a natural athletic presence: Jackson is tall and chiselled with a military bearing; Tansley has a tanned, muscular torso; and McGloin radiates the sparkle of a self-confessed “adrenalin junkie”. She talks about the thrill of testing rally cars. Jackson discusses his new ‘Walk The Spine’ challenge – a 431km hike along the Pennine Way, over the ‘backbone’ of England. And Tansley, who can now take tentative steps with crutches, is happy to do wheelchair pull-ups for the camera.
Together, they’ve demonstrated how people with SCIs can enjoy extraordinary new experiences. But what if a life-changing cure could be found? Could outliers like Jackson become the new normal? Only 75 years ago, those lucky enough to survive an SCI would succumb to fatal infections or complications. But although medical advances have extended life expectancy, until recently a cure was deemed impossible.
One reason for this pessimism was biological. The spinal cord contains a billion nerve cells (neurons) with ear-like dendrites and tongue-like axons that ‘listen’ and ‘talk’ to each other, constantly firing signals between your brain and your body. They control movement, but also regulate your temperature, blood pressure, and bladder, bowel and sexual functions. But whereas most cells regenerate naturally, neurons in your spine do not, suggesting the rampant cell death triggered by an SCI must be irreversible.
The other reason was financial. SCIs represent a tiny market for drug companies and medical bodies in comparison with the rewards of curing more widespread issues such as cancer. As a result, funding has been low and hope even lower. A shocking 1994 survey found that only 18 per cent of medics would be glad to be alive with a severe SCI, compared with 92 per cent of people actually living with one.
But progress was made through the activism of Christopher Reeve – the Superman actor who became quadriplegic after falling from a horse in 1995. Along with his wife, he launched the Christopher & Dana Reeve Foundation to fund innovative research. Critics branded him a pedlar of false hopes, and some claimed talk of a ‘cure’ undermined injured people’s struggles to accept reality. But Reeve’s hope was founded in fact. Back in 1981, Canadian neurologist Dr Albert Aguayo and neuroscientist Dr Sam David had discovered that by transferring the leg nerves of paralysed rats into the animals’ spinal cords, axons began to regrow. Human application was a distant dream, but the dogma-shattering revelation that axons could regenerate gave Reeve hope. Although he died in 2004, his charity has now funded $136m (£105m) of research.
Today’s game-changing research is still driven by grassroots campaigns. Wings for Life is a non-profit SCI research foundation set up in 2004 by Red Bull owner Dietrich Mateschitz and his friend, former motocross champion Heinz Kinigadner, whose son Hannes was paralysed in a motocross accident in 2003. It has already funded 211 research projects in 19 countries. Events such as the Wings for Life World Run, which takes place on May 9, help to fund its work.
"To find a cure for spinal cord injury is one of the last huge riddles in medical research, but everyone is now certain that the goal can be achieved,” insists CEO Anita Gerhardter. “The question is not if, but when.” Scientific Coordinator Dr Verena May agrees: “Those who research such a complex area know it’s not easy, but you can feel that determination now.”
But what does a ‘cure’ actually mean? “Foremost, we are looking for an actual biological cure,” says Gerhardter. “But the way to get to that cure is to restore functions like arm movement or bowel and bladder function. It is about much more than being able to walk.”
Some Wings for Life researchers are working to restore movement. Professor Grégoire Courtine of the Swiss Federal Institute of Technology Lausanne and Professor Jocelyne Bloch at the Lausanne University Hospital are conducting a clinical trial, ‘Stimulation Movement Overground’ (STIMO), which combines two treatments: precise epidural electrical stimulation of the spinal cord and intensive robot-assisted movement training. The former places an electrode over the ‘dura’, or protective coating, of the spine during rehabilitation to stimulate dormant neurons, enabling subjects to voluntarily flex their legs. The latter is a robotic system supporting their bodyweight as they move. Within a week, participants began to walk around the room with the support, and eventually cover 1km on a treadmill, even though some had shown no previous neurological recovery in over four years of rehabilitation. “It’s an amazing feeling,” says one patient, David Mzee. He was told in 2010 he’d never walk again. Last year, he walked 390m of the Wings for Life World Run.
Others are trying to help regrow axons. Professor Martin Schwab of the University of Zurich discovered that axon regrowth was being blocked by unhelpful growth inhibitors dubbed ‘Nogo proteins’. When he deactivated them with the help of antibodies – effectively turning the traffic lights from red to green – new axons sprouted. Wings for Life is now funding his research, as well as that of Yale’s Dr Stephen Strittmatter, who has developed an injectable interceptor molecule – dubbed the ‘Nogo trap’ – which masks these inhibitors, leaving axons free to grow.
Full human trials take years to complete, but each new project represents progress. Nevertheless, red herrings abound, so it’s handy that Wings for Life researcher Professor Michael Sofroniew of UCLA is a fan of detective fiction. He has restored the reputation of glial cells – tiny ‘bodyguards’ that protect neurons – which for decades were regarded as problematic.
Although they help form a healing scar after an SCI, this was believed to hamper regrowth, but Professor Sofroniew found that, by adding a hydrogel of growth-promoting factors, the scar actually supports it. “Scientists, just like detectives, look for clues and go against the most obvious answers,” he explains. Wings for Life will always encourage novel thinking, says Dr May: “Unlike most government institutions, we can fund highly original projects and think outside the box.”
With the help of foundations like Wings for Life, breakthroughs are frequent. One project showcased how nanoparticles, which can courier drugs to specific cells, could be used to reduce inflammation at the injury site. Another showed how an injection of 20 million stem cells, which can turn into almost any body cell, can help rewire damaged neural circuits. And one study is exploring how implants could stimulate the brain’s mesencephalic locomotor region, responsible for mobility.
“It’s amazing,” says McGloin. “It would be naive to think everyone will become completely able-bodied again, but if we can improve our lives on any level, we’re all for it. If I could have full hand function back, [as a driver] that would be better than walking.” Tansley says any treatments that researchers can deliver will have life-changing effects. “When I used to see guys in wheelchairs, I never thought, ‘How do they go to the toilet? What about sexual function?’” From moving into a bungalow to getting “caked in mud” when wheeling across a field to watch his son play football, he says, “life is a constant adaptation – you can do what you want, but in a different way. I try to do everything I did before”.
The mental challenge is often the hardest. An estimated 20 to 30 per cent of those with an SCI suffer from clinical depression. McGloin believes setting new life goals is key: “Taking up wheelchair rugby at university was the turning point. I stopped being defined by my injury and began being defined by my strengths.” She went on to represent Great Britain. After signing up for a track day and getting hooked on racing, she was ready for any obstacle. “To get my licence, I had to show I could exit the car unaided in seven seconds – but I did it. When driving, I just have more force through my arms than my legs, but the physicality is the same. I’m just like every other driver.”
Different injuries require different goals. Jackson cites former England rugby player Matt Hampson, who remains paralysed after a scrummaging accident in 2005; his charity has raised more than £1 million for injured young athletes. “He hasn’t made a physical recovery, but he’s made a mental recovery. He’s got a new purpose. To succeed isn’t just to be walking again, but to be happy.”
Social prejudices may have faded, but awkwardness lingers. “It’s always that elephant in the room,” says Jackson. That’s why he relishes the “savage banter” of his rugby friends. “It’s nice to be treated normally.” McGloin believes London 2012 was a watershed: “The campaign that Paralympians were superheroes was so positive. But I’ve also noticed how people’s perceptions of me have changed after seeing what I’ve achieved and how I present myself.”
Jackson, McGloin and Tansley are now proud Wings for Life ambassadors, and their adventures, talks, blogs and social-media work help raise funds – and hope. “Our ambassadors are a reminder of why we’re doing this,” says Dr May. “We see our work could lead to something, so they are a big motivator.” Intriguingly, their adventures could trigger new medical insights. Jackson has noticed that after extreme experiences – like terrifying ridge walks in the Himalayas – his movements are sharper. “In intense situations, your neurology is firing at its absolute highest. You are really alert, so I think it stretches your neurology in a positive way. Scientists at Bath University are measuring my gait with infrared cameras before and after a climb to get data on it.”
Many with an SCI can’t walk or scale mountains, but Jackson encourages everyone to push their bodies and minds in whatever ways their injury allows. “Doctors always give you a guarded prognosis to avoid litigation, and the NHS can’t fund your rehab forever, so they always say you might not recover. I’m determined to change that, because people shut down. I’m still seeing recovery now. Two and a half years on, Tano is standing. So we’re just telling people, ‘Don’t give up.’”
Research suggests that thanks to general medical advances the number of paraplegics with ‘complete’ injuries who regain motor function has risen from up to three per cent in the mid-1990s to up to 15.4 per cent in the mid-2010s. But the most profound changes are taking place within the minds of those with SCIs. “If I failed at something before, it would eat me up, but now I come back bigger and stronger,” says McGloin. Jackson says he’s now annoyingly positive: “Life is too short to say no to things.” And with 37,000 Instagram followers, Tansley believes he has a vital new role in life. “Before, I might have given 300 people gym advice and maybe two would make a positive change. Now, my journey is inspiring so many. When I was lying on the road that day, I said, ‘Something good will come of this.’ It has. And I’m just getting started.”
(C) The Red Bulletin
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