As the CEO of a charity committed to making a difference to the lives of people living with brain injury, as well as being the mother of a survivor, 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.”
‘The day we can say this company is successful is the day we save a life’
Hailed as the future of cancer diagnostics, Dxcover is set to revolutionise healthcare by pioneering a new test to diagnose cancer more quickly, simply and cost-effectively than ever before. CEO Dr Mark Hegarty and chief technology officer Dr Matthew J Baker discuss their pioneering work to date in brain cancer detection
Through the AI-led analysis of a single drop of blood, it is possible to detect brain cancer.
Having been verified through two groundbreaking clinical studies, the Dxcover Brain Cancer liquid biopsy, the first of its kind in the world, is now set to go into pivotal trials with a view to commercialisation in 2024 – paving the way to save lives and improve quality of life globally through the earlier diagnosis of cancer.
With the creation of the Dxcover Platform – which combines novel hardware with artificial intelligence algorithms to analyse a patient’s blood – and its patented Drop Dry Detect method of detecting cancer, a process which currently may take eight weeks or more to fully diagnose can be fast-tracked into a matter of minutes.
At a time when COVID-19 has increased waiting times for cancer diagnosis and treatment dramatically, the creation of a technology which simplifies and quickens the process of diagnosis is being widely supported, with £5.1m raised to date to progress its work.
And its application is also set to be extended into other forms of cancer, with the Scottish startup currently developing liquid biopsies for individual cancers through its Dxcover Cancer project, as well as a multi-cancer test which could detect many forms of the disease.
The business, which began life as a research project at the University of Strathclyde and spun out in 2019, plans to launch its first life-saving technology initially in the United States pending the success of the pivotal trial and regulatory approval process.
Dxcover – which recently rebranded from ClinSpec Diagnostics, and now also has the tagline The Future of Cancer Diagnostics – has also expanded into laboratory and office space in Glasgow three times the size of its former base, to help facilitate its ongoing growth and further development of its pioneering work.
“We work on the basis that every day counts – for patients who need a diagnosis and treatment, for doctors looking for better diagnostic methods, for healthcare service providers who want to do things more efficiently,” says Dr Mark Hegarty, CEO of Dxcover.
“But the day we will be able to say this company is successful is the day we can say we have saved a life.”
The company’s journey towards its lifesaving aims began in 2012, when Dr Matthew J Baker began his first experiments to establish whether a biopsy could be analysed by AI to distinguish between cancer and non-cancer diagnoses.
Once the potential of his work was realised, Dr Baker – an inventor with over 18 years’ experience in the field of clinical spectroscopy – patented his spectroscopic liquid biopsy technology and was introduced to Dr Hegarty by the University, who were keen to bring in the expertise to support the development of such game-changing research into a viable business which could apply its technology around the world.
Dr Hegarty, with over 20 years of experience in supporting startups and healthcare products into international successes, immediately recognised the potential of what Dr Baker had created – and the two men also realised they could work together effectively – “We both like fast response times and are not afraid of hard work,” says Dr Hegarty.
And from there, Dxcover has progressed into a venture with the clear potential to transform cancer diagnosis as we know it, leading the way in the marketplace with its innovation.
“Liquid biopsy is a hot topic, it’s a cutting-edge technique which holds great promise,” says Dr Baker, chief technology officer of the business.
“Most research focuses on genomic data, the big US companies are focusing on the genetic information from the tumour – but ours is different and looks at the entire signal from the serum. We don’t just look at tumour markers, we look at the human response. That is then teased apart by machine learning.
“There isn’t really another company out there with our approach, and we hold the patents for the diagnosis of all cancers, so no-one can do exactly what we do. Our platform methodology can handle any serum sample, it’s exactly the same analysis, so there’s great potential.”
Supported by a hugely capable and growing senior leadership team – its most recent appointment being operations director Dr David Eustace, an experienced figure in regulated diagnostic product development – Dxcover is working to a clear plan of how to build its cancer diagnosis offering.
“The most important thing at this stage is being able to add more data. Everything depends on the quality and value of the data. The growth of our data set is the key thing,” says Dr Hegarty.
“Our Dxcover Cancer project is a multi-cancer study aimed at developing a test to detect several cancers from a single blood sample, and also to indicate the organ of origin. That would be very beneficial for clinicians are often faced with vague symptoms, making it very difficult to pin down whether a person has cancer and the type of cancer.”
While its initial target for Dxcover Brain Cancer rollout will be the United States, the company continues to be based in its native Scotland, where it has progressed so strongly, benefiting from the backing of the Scottish Enterprise High Growth programme in its earliest days, which the team credit with being crucial in its development.
“We may well add an office in Europe as we progress, and will definitely have an office in the States sooner rather than later,” says Dr Hegarty.
“We are also looking to attract a highly-experienced set of US advisors, which we believe will be key to our growth.”
Dr Baker adds: “Being based in Glasgow gives us access to great young talent coming from the universities, we haven’t had any issues in employing the next generation of spectroscopists. For me, having our R&D hub here we benefit from the health tech ecosystem in Scotland, and it fits perfectly with what we want to do.
“We have a great team and strong values and we’re all working towards the same thing – saving lives.”
Redefining rehab possibilities through gaming
With the creation of LusioMATE, rehabilitation is being revolutionised through the use of gaming. NR Times meets Justin Keenan, CEO of Lusio Rehab, to learn more about the world-first device
From a series of chance encounters came the creation of a business which is helping to revolutionise therapy and rehabilitation on a global scale through the use of gaming.
With the creation of LusioMATE, the world’s first wearable therapy controller and game ecosystem, Lusio Rehab is helping to redraw the boundaries and rehab potential for people living with neurological conditions and other disabilities around the world.
Since its launch in 2019, the device has expanded far beyond its origins in Australia to be in use in the UK, across Europe, the United States and South America.
Already widely adopted by neuro professionals to create bespoke exercise programmes for both ‘in-clinic’ and ‘at-home’ settings – with groundbreaking technology providing real-time data to monitor clients’ engagement remotely – during the pandemic, the use of LusioMATE has “skyrocketed”, and manufacturing capacity has had to be scaled up to meet this growing demand.
Another area where demand is high is for fresh gaming content. With a current suite of 28 games developed in house, Lusio Rehab’s commitment to constantly expand on the client experience, whether through new games or new feature development, is strong and something they take very seriously.
“I think the most rewarding thing for us is when we hear of the achievements that are made through using LusioMATE, when clients have gone far beyond their preconceived ideas of what they are capable of,” says Justin Keenan, CEO of Lusio Rehab.
“By being completely engrossed in their exercise via the games we have created, people are way surpassing their pre-supposed limitations. It genuinely gives me goosebumps to know we’re enabling such achievements. We talk about ‘rehab without boundaries’ and I think that’s exactly what it is.
“But while we’re delivering incredible results, this isn’t a finished product and it probably won’t ever be. Since the earliest days, we’ve been led by clients and professionals, that’s how our story started, and that will always be the case. We’re building the car as we’re driving it.”
The business has been blessed by many interventions – “we’ve had a lot of sliding door moments and serendipity”, says Justin – which have enabled it to get to where it is today.
Back in 2015, Armin Songhori, now head of tech at Lusio Rehab, was working in his native Iran. A seasoned entrepreneur and robotics engineer, he was approached by a doctor friend, who was treating Arshia, a five-year-old boy with Cerebral Palsy.
“He was struggling to find a way to engage Arshia in at-home therapy, he wasn’t motivated to do it at all,” says Justin.
“Armin got thinking, and realised a remote-controlled car may be a good place to start with a young boy. He created a bendable sensor for Arshia’s wrist, which enabled him to control the car whilst doing his therapy, and Arshia absolutely fell in love with it.
“That was the eureka moment for Armin in how gamification could help with physical therapy. That was the start of the rollercoaster ride into the world we now find ourselves in.”
Armin then moved to Australia, where Justin ran a recruitment business. Justin needed help in shortlisting candidates with expertise in C++ code, and was introduced to Armin by fellow recruitment entrepreneur Chris McGowan, who was also to become part of the Lusio Rehab story.
“While we were working together, Armin told me about his invention for Arshia, which was now onto its fourth prototype, and he asked what I thought. It was amazing – but without any experience of how to launch this type of product and no experience in healthcare, we were just three friends on a mission to see where it took us,” says Justin.
Then came the next stroke of luck.
“When meeting with an IoT expert in our network we learnt of the Cerebral Palsy Alliance and their Remarkable Tech accelerator programme, which championed technology to improve the lives of people living with a disability. It sounded perfect for us – but the deadline was that same day,” recalls Justin.
“Fortunately, we got the application in, completed the pitch, and were shortlisted onto the programme. Being mentored by leaders in medtech and working closely with clinical experts, within six months we’d gone from a great idea to the foundations of a great product that could change people’s lives.”
And from there came a business which is delivering often life-changing moments. Whether for children who struggle with habilitation, or for adults who have seemingly reached their potential, or for older people in care homes, LusioMATE is helping people to realise new possibilities.
Initially rolled out through the Cerebral Palsy Alliance network across New South Wales, its ease of use and ability to engage people of all ages and abilities through gaming has been central to its worldwide growth.
“That’s the core principle – it’s inclusive – but we are constantly working on new features,” says Justin.
“We’re continually working with clients and therapists to ensure it delivers. We’re proud that any age group, of any physical capability, who require physical therapy to prevent deterioration or improve quality of life, will benefit from LusioMATE. The sensors can be tailored to the client’s specific range of motion such that it can really help anyone, regardless of their range of movement.
“At the same time, although technology is amazing, if people don’t know how to use it, or it’s not what they need, then it’s useless. We’re certainly not afraid to revise any part of its DNA and do so all the time.
“We originally launched with a prescription gaming feature where therapists could create very detailed exercise plans. However feedback from our clinical partners taught us that they didn’t have time for duplication of work, writing their own internal client reports and prescriptions to LusioMATE. But they loved the idea of creating movement goals for their clients, so we designed ‘the detail’ out and streamlined the experience.
“We are always engaging with people, listening to their feedback and responding. We’re also lucky to have an exceptional team who work tirelessly on every aspect of the tech and client experience.
“We’re not a developer of assistive technology who creates a product then that’s it, we want to be on the journey with the people who use it.”
One area in which LusioMATE has always been hugely effective – and particularly so during the pandemic – is with its at-home rehab.
“When clients do their therapy at home, I don’t think it’s uncommon for a bit of ‘slacking off’ to happen, but for the first time ever, physios and OTs can get real time data to see whether that is the case or not, which allows them to triage the situation,” says Justin.
“As with Arshia in the very earliest days of Lusio, the need to do at-home therapy is hugely important, but often people aren’t as engaged as they could be. But through gamification, we’ve helped to address that.
“When the pandemic hit, telehealth came in pretty much overnight, and with LusioMATE, the therapy could move from being physically in-clinic to being at-home.
“Those therapists who already used LusioMATE already had the clients’ bespoke plans in place, and they could be monitored remotely using that data. And among individual users, the take-up absolutely skyrocketed for us.
“Clients soon realised that the remote limitations were endless, with the scope for taking LusioMATE on holidays, while travelling, and even when working. Essentially LusioMATE is a therapist in your pocket.”
Going forward, Justin and his team are focused on continuing the global roll-out, with LusioMATE now ahead in its strategic plans due to its huge popularity during the pandemic.
“When we first launched the product, we did worry it was too early, but like with all inventions there are the early adopters who helped it to grow, and we built from there – now, we have built really strongly during the past year and will keep going,” says Justin.
“We are bringing more clients in day by day, week by week, and are increasing our client base in both born and acquired disability and injury.
“We continue to add new features, most recently a trophy-based reward system to motivate player adherence, which also doubles up as an ‘at a glance’ monitoring tool for clinicians too.
“There is a whole range of data that we can provide to clinicians for monitoring, and we are currently looking to expand what data we can display in-app for easy reference.
“We’re also looking to create an inclusive leaderboard – one that is based on achievement of goals and not necessarily on how long or how many times you’ve played something.
“We’re constantly looking at how to make the game play a richer experience, and adapting what we do in response to client and therapist needs. The work is ongoing and we’re committed to making LusioMATE the best it can be.
“The difference we’ve made so far has been fantastic – not in terms of the market necessarily, we’re not a disruptor, but to people’s lives. To hear the stories of people who have achieved and exceeded their personal movement goals is what it’s all about. Helping people like this is such a privilege for us all at Lusio Rehab.”
Delivering support to patients, families and carers
As a specialist provider of mental health support, caring for some of the most clinically complex patients in the UK’s mental health system, the team of experts at St Andrew’s provide bespoke clinical and therapeutic approaches that enable vulnerable patients to recover. Here, NR Times meets senior social worker, Emma Wakeman
Can you tell us about your experience in mental health
I’ve been at St Andrew’s for three and a half years and I’ve always worked in neuropsychiatry. I actually did a student placement here when I was training to be a social worker and just absolutely loved it. I loved the patients and the work so I applied for a job and got it.
Before St Andrew’s, I worked with the charity Mind and had done a lot of work in mental health.
Can you give us some insight into the service that you work in
I work as a social worker within St Andrew’s neuropsychiatry service and am based on our brain injury wards. We have different wards based on the needs of patients; an admissions ward for people who are acutely unwell, often with complex needs and behaviours that challenge and rehabilitation wards where we focus on a patient’s recovery with a view to discharge.
Within our rehabilitation service we support people to re-learn skills of daily living and help them to psychologically manage the changes to their cognition, speech and language and mobility. It’s really about them being able to move on and out of hospital. This is always the goal, no-one wants to stay in hospital for long.
Our neuro service also includes specialist Huntington’s disease wards and a new dementia hub. Dementia can be an extremely debilitating disease so it’s essential that we are able to support people with their activities for daily living (ADL) and provide the compassion and care that they need at the end of life.
Describe a typical patient presentation
Of course no patient is the same as another, but you do see some common themes when you’re working with people with brain injuries or neurological conditions.
A lot of the time patients can lack motivation and this can be perceived as laziness, but it’s actually not, it is the changes in their brain that affect how they see the world and the tasks ahead of them.
People who have suffered a brain injury can be very impulsive as they have lost that filter that ordinarily says ‘Stop, don’t do that as it could be dangerous to me or someone else’, so that can be really difficult for them and others.
Then we have people who, following a brain injury, have retained abilities in some areas, so for example, their speech could be fine but they aren’t able to use their hands, and that can be really distressing for them.
What is the difference between the service you work in and a general neuro rehabilitation ward?
Our neuropsychiatry service is very different, often people, unfortunately, come to us from a failed placement because ours is a very specialised service that is able to support people with behaviours that challenge in a compassionate and least restrictive way.
Our years of expertise and knowledge at St Andrew’s mean that we know what works well and we are always pursuing new approaches and resources, such as virtual reality (VR). Our specialisms helps people who don’t flourish elsewhere to rebuild their lives following brain injury.
In addition to their medical care, in what other ways do you support patients?
As a social worker in a hospital I am are here to make sure the patient’s social needs are met and we do that in a variety of ways. It could be ensuring that people have good contact with their family members, however that looks, or it could involve making sure that their finances are in order, so if they are entitled to benefits they get those and determining whether they are safe to spend their money. Sometimes people can be at risk of financial exploitation or they are unable to budget and they can end up in debt.
We also oversee patient safeguarding incidents and check that protocols and support are in place to make sure that people are safe in hospital and once they leave us.
As well as working on behalf of the patient we also support their family and carers and liaise with commissioners and external networks to ensure that people’s recovery journey here goes as smoothly as possible and that at the end of their stay with us we discharge them to the right place.
What sets St Andrew’s apart?
Well, the first thing is that St Andrews have ward-based social workers. While I’m ‘bigging up’ my own profession, it is very much needed. If you think about hospital it is very medically focused, so that social emphasis on, and support for, patients is very important.
Within a hospital environment we are a point of contact for carers who can be very confused and distressed. St Andrew’s often helps people from outside of area, so it is really important to have that person on the ward that can support family and carers through the process. We also have a carers’ lead on site who can offer additional guidance and help.
The role of hospital social worker is not something you get everywhere.
What challenges do you face in your role?
Personally, I think one of the big challenges is making sure that you are working in the patient’s best interests, not putting your own values and judgement on their situation. Making sure that they have a voice and you’re doing the best you can for them.
People with a neurological condition or brain injury can find it difficult to express what they think and feel. Often their emotions can betray them because they will feel one thing and do another or they don’t have insight into their condition, which makes it really hard for them to accept treatment and they will almost resist what is really good for them and that can be hard to deal with sometimes.
What do you most enjoy about your role?
In social work, we deal a lot with discharge and I think anyone who works here will say the best thing is to see a patient moving on, going to the next placement, going back home, returning closer to family. It’s an amazing achievement when you see that.
Another key and enjoyable part of my role is working with family members and I think they are often forgotten in the world of mental health. I love helping family because you meet people from all walks of life so it’s really interesting and providing this support is something that gives me a great deal of satisfaction.
Tell us an interesting fact about yourself…
I actually have two scars on my face. One from when I was hit by a boomerang, and the other one on my chin from a skateboarding accident. Unfortunately none of them was as an adult, both as a child, I’m not that interesting now!
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