Spinal Research believes in a world where spinal cord injury is no longer a life sentence

Spinal Research believes in a world where spinal cord injury is no longer a life sentence

Tackling Paralysis is the latest campaign from Spinal Research, promoting awareness of paralysis within the rugby community. The concept began with four men at sea …

At the heart of Tackling Paralysis was a basic concept with equally simple aims: we wanted to raise awareness of the need for more research into the devastating effects of paralysis and how, with the support of the rugby community, we can give hope to those living with a spinal cord injury. But that’s got nothing to do with four men at sea, of course.

Peter Robinson, George Biggar, Dicky Taylor and Stuart Watts are the quartet of aquatic voyageurs in question. And for Spinal Research they put their bodies, minds and souls to the ultimate test and completed one of the world’s greatest physical challenges: rowing unaided for 3,000 miles across the unforgiving Atlantic Ocean. Not only did they win the race, and broke the world record for a four-man team, but they raised a truly phenomenal £200k for the charity in the process.

Inspiration for this epic challenge, that would push the limits of human endurance, came from team member Peter’s friend Ben Kende. A rising rugby star, Ben was just 18 when he was badly injured while playing rugby. The result was a spinal cord injury at C5/6, causing instant paralysis from the neck down. It was his resilience in the face of adversity and dogged determination that the four oarsmen took with them on their transatlantic row.

Rugby, it increasingly became clear, was a common feature for a lot of our supporters and fundraisers. Be they fans or players, amateurs or professionals, the rugby community knows more than most about spinal cord injury. And this is how, inadvertently, four men rowing from the Canaries to Antigua with blistered hands and bottoms, helped inspire our set-piece campaigning initiative of last year.

Clearly, it was Ben who was the most important case study when it came to inspiration, and his rhetoric fed into our conception of the Tackling Paralysis campaign as it began to take an early shape. “I remember lying there looking up at the sky and only being able to move my head,” he recalled following the accident. After two weeks in intensive care and an operation to stabilise the damage to his vertebrae, Ben transferred to a rehabilitation centre for several months to learn to cope mentally with his paralysis and to benefit from physiotherapy and adaptive training.

After the surgery and months undergoing further rehabilitation, Ben began to regain some movement in his arms, and some patchy sensation below his injury in his knees and ankles. He also has feeling in areas of his torso, but he cannot control his bladder and bowel and requires catheters and enemas to manage these respectively – an often-unspoken reality of paralysis.

“If the research could help me regain my bladder, bowel and sexual function, that for me would be an amazing change to my lifestyle and would give me infinitely more independence,” he reflected, on his hopes for scientific breakthroughs. And Ben is not alone when stating this; restoring pelvic function is of prime importance for those with spinal cord injury.

Therefore, we sought to express how our pioneering research is not just aimed at finding a cure for paralysis but significantly improving quality of life too. This was echoed in our constant consideration, that in no way was this campaign aiming to discourage people from playing rugby due to the potential risks.

In that spirit, we launched our campaign in conjunction with England and European Champions Saracens Rugby Club and our patron Jason Leonard OBE – English rugby’s record caps holder. As he stated in the Tackling Paralysis promotional video: “It’s all about awareness, having fun, and letting people know what Spinal Research do and how they go about it.”

To build up a head of steam and really make use of the momentum we had established with Saracens, we shared our DropKickABLE Challenge with the world – a fun and inclusive idea to engage the rugby community. For the DropKickABLE Challenge we asked participants to post a short video of themselves taking a drop kick in whatever scenario or situation possible. This could be as simple or as complex as imaginable: kicking a lemon into a pan, back heeling paper balls into a bin, or even getting a rugby ball into a basketball hoop with a trick-shot.

Saracens stars were the first to have a go, and between Facebook, Twitter, and Instagram we were able to spread awareness of the campaign across social media. The growth of these channels and increased interaction is testament to the early success of the challenge. Exposure was maintained with our subsequent decision to offer the prize of a signed Jason Leonard shirt for one lucky contestant. Again, this saw an uptick in those taking part in the challenge – and by proxy spreading awareness of the wider campaign.

This all occurred alongside the 2019 Rugby World Cup, as England surged through the competition, leading to the undoubted highlight of the entire Tackling Paralysis campaign. After several Saracens players had shared their drop kick attempt, England hero Billy Vunipola – all the way from Japan – posted his effort taken during a break in training to his 60,000 followers, nominating Liverpool star Virgin van Dijk to have a go next.

Vunipola’s effort, and van Dijk’s response of “challenge accepted for a great cause big man! Watch this space [and] good luck this weekend” was met with jubilation in our small office. We couldn’t believe that two people with a combined social media presence of over 1 million were talking about Tackling Paralysis and raising awareness for spinal cord injury.

But what we thought was our biggest victory turned out to be somewhat pyrrhic; for the weekend van Dijk was referring to was, of course, the 2019 Rugby World Cup final, which England went on to lose to South Africa. The momentum evaporated, van Dijk didn’t attempt the challenge, and the previously palpable rugby buzz drained from the nation. From then on, the DropKickABLE challenge faded somewhat into the background, as we sought to focus on other areas of the wider campaign.

Indeed, these were by no means no less important for our goals of raising awareness and funds through the rugby community. For the most part this involved an adjacent strategy of engaging clubs and professional players to promote the awareness aspect, while supporting individual fundraisers to undertake their own challenges and raise money. Notable successes include professional lock and Harlequins player Matt Symons joining the Spinal Research team as an ambassador, while over 50 people requested fundraising packs online.

Though none of the funds we raised were restricted to any specific projects, the sums bought in were vital in expanding and enhancing our research capacity. Our exciting portfolio of projects include PhD studentships to clinical early career grants, and look at accelerating R&D, improving data sharing, and establishing biomarkers, amongst other things. These myriad projects can be organised and understood across the research and design continuum, from basic science level to patient-based projects, or thematically according to how they align with patient priorities.

In the first instance, this means that Spinal Research is supporting both basic projects that are studying mechanisms or seeking to establish proof or concept, while also taking research further and funding trials that are establishing modes of treatment and ensuring greater access to meaningful recovery now.

Spinal Research, as noted, also considers patient priorities when making awards. In recent years this has become much more focused. Of the projects that fall within the translational or clinical criteria, the majority have a clear focus on areas such as hand and upper limb function, and bladder, bowel and sexual function – things explicitly referenced to be of fundamental importance by supporters like Ben. Nevertheless, continuing thematically, we also fund research concerned with neuropathic pain and locomotor training.

Another one of our amazing supporters, Dr David Millar, has a story much like Ben’s. Thirty years ago, as a Glasgow and Scotland Under-21 player, he suffered a spinal cord injury while playing the sport during a season in New Zealand. When this happened to him, the prevailing scientific dogma meant clinicians and researchers were cynical about the prospects and opportunity to restore function lost to trauma of the central nervous system.

But fast forward to present day – and with over £16k raised for Tackling Paralysis after his Mighty 333 challenge (300-mile hand-bike, 30-mile kayak, three-mile walk) – David is optimistic. He said: “Prospects of meaningful treatments now appear on the horizon to offer hope. It’s hard to overestimate, not only the physical impact successful treatments could have, but also the psychological benefits.”

Repairing the spinal cord remains one of medicines greatest challenges and requires more investment, but with support from the rugby community and beyond, Spinal Research believes we can all take one big step forward to a world where spinal cord injury is no longer a life sentence. We’ve reached an important moment in the history of research; pioneering scientific breakthroughs can give the paralysed the power to improve and to move.

Who knows where we will be by the next time four people break the world record for an unaided row across the Atlantic? Maybe non-invasive neuromodulation will be able to treat bladder, bowel and sexual function, maybe England will have won the Rugby World Cup?

If you have a passion for rugby or can help connect us up with a local team, please get in touch with Louise on 020 7653 8935 or email us on rugby@spinal-research.org. If you would like a fundraising pack and FREE rugby shirt then visit our website www.spinal-research.org/rugby

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