A mother and son team who have devised a pioneering standing wheelchair are looking to partner with a manufacturer to bring their prototype to fruition.
The Walking Wheelchair enables people with limited use of their legs to assume a standing position, using a saddle therapy seat and Segway-style wheelbase.
Its design, which is aimed at people living with conditions including Muscular Sclerosis, Cerebral Palsy, Motor Neurone Disease and spinal injury (L1-5), is protected by patent and has already won awards for its innovative design.
It differs from what is already available through its saddle seat lifting the user’s weight vertically to standing, rather than a conventional seat which tips, and has a gyroscope to balance the standing weight instead of a counterweight. It also has a two wheel wheelbase with a tight turning circle rather than the standard six-wheel base.
Now, its creators Suzanne Brewer and her 14-year-old son Jarvis, are looking to bring their idea to reality by finding a company to license the Walking Wheelchair and add the product to their range.
Work on the idea for the Walking Wheelchair begun in 2018, when Jarvis was just 11, and he and his mum were inspired by the experience of Andy Masters, who lives with spinal injury and uses a wheelchair, at an event they had attended at their local rugby club in South London.
Unable to be noticed amidst the clamour at a busy bar, Suzanne and Jarvis realised the everyday struggles Andy and others who use a wheelchair must experience, and were compelled into action by a children’s enterprise competition being run by Sky News.
From there, the concept has developed hugely, with its initial prototype being redesigned following insight from experts at Stoke Mandeville Hospital and the Back Up Trust – with the design’s inspiration Andy being one of the advisors – and product is now ready to launch.
Suzanne, an architect and owner of Suzanne Brewer Architects, will be exhibiting at Naidex 2021 in their search for a partner to help launch the Walking Wheelchair.
“From seeing the need for a more discrete standing wheelchair than anything that was available, we did some designs and then ordered the parts from eBay so we could build it – we had to take it to a prototyping company for that bit, that was a bit far for us,” recalls Suzanne.
“We have had some great insight and support to help us on our journey. For example, Jarvis loves being on his bike so we initially included a bike seat, but after we visited occupational therapists at Stoke Mandeville, they recommended we use a Bambach saddle seat instead.
“We came at it initially from a design perspective, but our feedback has made us realise how the Walking Wheelchair can positively impact posture and bowel movement, we’ve realised the benefit it could have on people’s needs.
“It has been brilliant to work on this with Jarvis, we’ve both really enjoyed it, and it has turned into something which we hope will make a difference. Now, we are looking for a company who will add our product to their range.”
While the Walking Wheelchair was due to be unveiled at Naidex 2020, which was cancelled due to the COVID-19 pandemic, Suzanne says the extra year has been both helpful but frustrating.
In the past year, the invention won the product design category of the international Dezeen Awards, and was named a finalist in the international Intelligent Design Awards, having been nominated by the British Design Fund.
“In some ways we lost a lot of time, but in others we were able to gain momentum through the awards and we got a bit of national press too. We’re keen to make up for lost time and are looking forward to meeting people at Naidex and to hopefully finding a company to work with,” says Suzanne.
Emilia Clarke’s SameYou – a catalyst for change
Tackling the vital issues of the lack of neurorehabilitation provision and the ongoing stigma around brain injury, SameYou was founded by globally-famous actor Emilia Clarke to fight the corner and provide a voice for survivors who feel they are forgotten. NR Times speaks with Emilia’s mum Jenny Clarke, CEO of SameYou, about the charity’s brave campaigning and funding of research which is making waves on a global scale
As the CEO of the charity SameYou committed to making a difference to the lives of people living with brain injury, as well as being the mother of survivor Emilia Clarke, and a patient herself, Jenny Clarke truly understands the impact of acquired brain injury.
In a twist of fate, like her daughter Emilia, Jenny also has two mirror aneurysms in her brain. While Emilia almost died twice, mercifully Jenny did not experience such traumatic illness – yet its impact it still life-changing.
“It’s familial, apparently. It was a complete fluke that I found out, really,” says Jenny.
“I went for an MRI scan, and they said, ‘You’re fine, but did you know you have two aneurysms?’ It was a shock.
“So I do understand what it’s like to have that diagnosis, especially after what happened to Emilia.”
Emilia’s story is, of course, now well documented. Globally-famous Emilia, best known as Daenerys Targaryen from Game of Thrones, had the first of two brain haemorrhages in 2011, just after she had finished filming season one of the iconic series.
The Emmy-nominated actor and her family continue to be indebted to the National Hospital for Neurology and Neuroscience (NHNN) Queen Square in London, which they credit with saving Emilia’s life.
Emilia has since become an ambassador for the Royal College of Nursing and Nursing Now, after the hugely positive impact of nursing care during her time in Queen Square; indeed, her relationship with her nurse at NHNN continues to this day.
Her second haemorrhage, in a hospital in New York two years later, was caused when a preventative procedure failed.
Six years later, in 2019, having been shocked at the lack of focus on brain injury and its seismic impact – and the stigma that continues to persist in speaking out, despite the fact one in three people sustain brain injury during their lives – Emilia took the brave decision to share her story for the first time, to help inspire others who sustain brain injury and are forced to live with its effects.
“We realised we had to do something because she has a global platform. It took a long time to tell her story, it is very, very difficult to talk about. There is stigma and shame attached to it, people don’t know what to say, there is no common language,” says Jenny.
“Shockingly, brain injury is the biggest problem in the neurological world, it’s bigger than dementia – but who is saying anything about it?
“Emilia had no idea (anything was wrong) before her first aneurysm, we had no history of stroke in the family, there was no warning. She was going through this tremendous transition with Game of Thrones when she nearly lost her life.
“Then two years later, she came even closer to losing her life when her preventative treatment for her aneurysm went wrong, which I think highlighted how fragile the brain is. But she was lucky, being young and very fit, she survived, and has learnt to manage her residual fatigue, but our family knows how hard it is to cope with the impact of a sudden brain injury.
“This whole experience made us realise how very different things could have been.”
Committed to changing the situation, Emilia established SameYou, a UK and USA registered charity which tackles the issue of the lack of neurorehabilitation and stressing the need for holistic and ongoing care and support once an ABI survivor leaves hospital.
Building on Emilia’s profile and personal experience, alongside Jenny’s expertise in business, the charity is already making waves around the world. With a website – sameyou.org – bustling with signposting information through its UK Neuro Recovery Directory, advice from leading experts and inspirational video content, survivors can find a host of resources on a daily basis, while knowing SameYou is fighting hard on their behalf in the background to bring about change.
SameYou is also collaborating with global partners to find and test new treatments, with a number of exciting projects already underway.
“With brain injury, you’re the same person inside even if your brain doesn’t let you appear that way. But you’re the same you,” says Jenny.
“We decided the biggest gap we could see was in rehabilitation, there is next to nothing. If you’re severely injured, or have a TBI or stroke, then you can get up to 12 weeks of rehabilitation in the UK it’s similar in the States, but resources are so scarce.
“The accessibility of neurorehabilitation at the moment is completely inequitable. If you’re lucky enough to be referred to Queen Square, then lucky enough to get in, then you have access to this fantastic care – but when you have a brain injury, it does alter the way you live your life. Often, people have no hope and thousands of survivors tell us they feel abandoned.
“We want to put all our energy into this to make sure people get access to the resources and support that will help them recover.”
The scale of the task ahead is something Jenny and the SameYou team continue to be shocked by but determined to make a positive difference – “We are certainly punching above our weight as a small startup, but believe that partnerships to deliver change will make the most impact on survivors and their families,” says Jenny.
“The only positive thing I can say about COVID is this new consciousness is that people are realising hat recovery care is essential. Everyone understands the need for research, and the fantastic advances in acute care, but recovery is not prioritised,” says Jenny.
“Successive Governments around the world have ignored it, social services can’t provide it. We want to make as loud a noise as possible to represent the voices of brain injury and stroke survivors and their carers.
“When I was a child, my grandmother and aunt had cancer and that was almost shameful – but look at how we regard cancer now. It shows the great strides we have made in that area, and I see that we are at the start of making that change with brain injury.
“I do feel that there are so many people who want to make a difference – and who are doing great work, but our impact is reduced without collaboration.”
And through such collaboration, SameYou is already making its mark.
One area it is particularly passionate about is nursing care and in partnership with the RCN Foundation and the University of Edinburgh has developed the landmark Advanced Practice Neurological Rehabilitation Education Programme, to enable better care for young people recovering from brain injury and stroke.
“When the brilliant neurosurgeons have saved your life, you don’t get to see them often and the continuity of care is delivered by nurses. If you have a specialist nurse who combines her clinical experience with care and compassionate that makes all the difference,” says Jenny.
“Nurses can give confidence, strength and reassurance.
“We still keep in touch with Tina, Emilia’s nurse at Queen Square. If Emilia is in LA, she will phone with any questions she has and get those answers from Tina, which shows the level of bonding and trust.
“Through our work, we want to help create holistic rehabilitation, which we describe as being for ‘brain, body and mind’. We aren’t ashamed about using non clinical language because that’s how survivors think about it.
“Every person with brain injury wants to be treated as a whole person so motor, cognitive and emotional support is essential for the best possible recovery.”
Another initiative is to support and popularise the use of telerehabilitation for brain injury, through its work with N-ROL. Having initially been piloted at UCL, N-ROL aims to reduce social isolation and improve self-efficacy for ongoing post-stroke recovery by providing high quality, group-based online neurorehabilitation to patients denied conventional therapy due to COVID-19.
It is now being rolled out into East Lancashire Hospitals NHS Trust, working alongside the University of Central Lancashire.
“Technology is so important, and telerehabilitation has to be an essential part of the recovery pathway,” says Jenny. SameYou is partnering with Visionable, a pioneering healthcare techniology company who are using their advances to improve the stroke and brain injury pathways.
“We believe strongly that telerehabilitation gives rehabilitation people would not get otherwise. Hospitals can only see a limited number of patients a year, outpatient rehab numbers are so limited, so we see the role telerehabilitation can play.
“Like with UCL, East Lancashire are committed to neurorehabilitation. We funded a pilot there and are trying to find the money to broaden that to other Trusts in their area.”
While the pandemic has delayed one of its most eagerly awaited initiatives, the three-year project with Spaulding Hospital in the United States – which explores the interplay between physical, mental and social challenges of brain injury survivors – happily it is now set to get underway.
“We recruited the cohort and then COVID came, but the project is now starting,” says Jenny.
“We are looking at young adults’ resilience after brain injury, it is biopsychosocial research. One of the lovely things is that a lot of the team are young investigators, brilliant and very qualified to understand the issues.”
With great progress already being made for the startup charity, its mission to truly make brain injury more accepted, with more resource channeled into care provision, is one that will only grow.
“We have a long way to go,” says Jenny.
“With cancer for instance, you can ‘box’ it, whether it’s in the breast or the bowel for example, but when your brain is injured there is the sense that your brain has let all of you down.
“When you have a head trauma, people often tell us they think it’s their fault, any sort of brain injury is shockingly sudden and totally unexpected so there is no time to prepare yourself.
“With endovascular coiling, which is used to treat an aneurysm, it’s a procedure which I found out uses technology that started 20 years ago. Every minute we’re getting new upgrades and updates on your phone – why not here?
“We are a catalyst for change and are convening the most innovative minds in neuroscience, technology and neurorehabilitation to collaborate and put survivors at the heart of change and make a positive change.
“That’s what we want to do – play our part in making brain injury recovery better.”
Patient story: “Covid wasn’t as scary for me as the after-effects were.”
‘We can change the reality for so many survivors’
Through the use of AI-powered technology, BrainQ is set to revolutionise the potential for stroke patients in their recovery from disability and lasting effects of their condition. NR Times speaks to co-founder and CEO Yotam Drechsler about the life-changing potential of its electromagnetic field therapy
In just a few years from now, the potential for stroke patients to reduce and even reverse disabilities could be reality.
Through the groundbreaking work of BrainQ, whose AI-powered electromagnetic field therapy is revolutionising traditional recovery prospects, the outcomes for people who have had a stroke could be unrecognisable against today’s reality.
Results from its pilot trial are undeniably exciting – after receiving BrainQ therapy, 77 per cent of patients had either no symptoms or minor symptoms, with no significant disability, scoring one or even zero on the modified Rankin Scale (mRS), the gold standard for measuring global disability.
Additionally, over 90 per cent of people improved by two or more mRS points through the use of BrainQ’s technology.
Crucially, in addition to such impressive statistics on the reversal of disability, the window of opportunity for intervention post-stroke can be extended by BrainQ from hours into weeks.
Having been awarded FDA Breakthrough Device status in the United States, a multi-centre pivotal study is now planned, ahead of FDA approval, with the company recently announcing that $40million has been raised to help progress this.
Under current timescales, BrainQ is aiming to bring its technology to market within the next few years in the US, with roll-out across the world, including to the UK, planned for the coming years – and the potential to expand into tackling other neurological conditions also in the planning.
While Israeli-based BrainQ is now one of the most eagerly-anticipated launches in neurorehab, its road to this point has been long. Inspired by co-founder and chief innovation officer Dr Yaron Segal’s son Lear, who lives with familial dysautonomia, the creation of BrainQ stems from his father’s determination to find a solution to tackle his condition at its core, not just treat his symptoms.
“You need an extra reason to do something against all odds,” says CEO Yotam Drechsler, who co-founded BrainQ with Dr Segal.
“Yaron was on a mission to care for his own son, and when you have such a mission, you cannot accept no for an answer.
“He has been on an almost 20-year journey, but now we will be able to change the reality for so many people.”
Working at the forefront of tech innovation globally, BrainQ’s therapy works by using a cloud-based platform to map brain network activity using machine learning algorithms to extract biological insights that translate into precision therapies.
The therapies – pioneered by BrainQ’s team of experts in AI, data science, machine learning, neurology and neuroscience – are delivered through a non-invasive wearable medical device that creates a frequency-tuned, low-intensity electromagnetic field.
Following the concept and development stage, its work elevated to the next level when BrainQ decided the time was right to take it into the human testing phase, which culminated in its pilot trial for ischemic stroke.
“When we opened the envelope and we saw the results, we realised this was a big breakthrough. It was really astonishing, it wasn’t just the potential to expedite recovery, it was two times the effect of the normal course of recovery,” says Yotam.
“We realise the potential of the stroke market right now. The vast majority of stroke care within preventative therapies is administered within the first few hours following a stroke. Only about five per cent of patients can receive this treatment, as there is a limited window of opportunity of six hours.
“But if you think about it, to recover that damage you need to reverse it, so we set out to do that, as well as to increase the size of the window of opportunity. So instead of talking hours, we aim to make that into weeks. So for us, the six hours and five per cent is now two weeks and a potential of applicability of 40 per cent.
“In terms of scale, this is a huge opportunity for people who have had a stroke and for us, and this is the main focus we plan to lead.”
Determined to set itself apart from the many other entrants to the market, BrainQ has been eager to put its technology to the test and to independently verify its claims.
“With a lot of technology, everything looks good in the first minute but does it really work? The standards are so high to get to the pre-clinical stage, and many will fail to address this,” says Yotam.
“The technology may be very much attractive, but that’s not enough. Most technology therapies don’t test to the highest criteria.
“BrainQ has got a safety profile, there are no related adverse effects. It is below the threshold for exposure, so the transition from pre-clinical to clinical stage is an easy one from the risk side.
“It has been designed to the highest standards after so much study, we have worked with some of the very best doctors and drove ourselves hard.”
Now, as the business works towards its goal of commercialisation in the US, its gaze is now looking to the future even beyond that, in changing the reality for patients living with other neurological conditions.
“Can it be applied on a grander scale? The answer is yes,” says Yotam.
“BrainQ believes the technology could be applied to more than stroke, and preliminary indications are that it could be effective in Alzheimer’s, Parkinson’s, MS, spinal cord injury, and TBI.
“It gives very different and almost unlimited opportunities in neuro care and we do believe this could solve many of the problems facing these different patient populations, with the ability to do this increasing all the time through our technology.”
But the next crucial milestone in the grand plan is the multi-centre trial in the US, which is set for the months ahead.
“We are now looking forward to kicking off the study. The plan is to make it to the US market in the coming years, so the main focus right now is with the multi-centre study,” says Yotam.
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