Originally created in March 1982 in response to the injury of Henry Stifel, the Christopher & Dana Reeve Foundation – first established as the Stifel Paralysis Research Foundation – is marking its 40th anniversary.
Over the last four decades, the Reeve Foundation has evolved to become a paralysis-focused non-profit organisation working across the United States and globally to address a dual care-cure mission – providing free, comprehensive resources to help those impacted by spinal cord injury (SCI) and paralysis as it advances the most promising scientific advances toward cures.
As the Foundation marks this milestone, it celebrates 40 years of progress and the seismic shift that it helped steer to move the field of SCI research to its current state, whereby scientists agree that paralysis cures are not a matter of ‘if’ but ‘when’.
Forty years ago, on March 12, Henry Stifel, then 17-years-old, was in a car accident that shattered his vertebrae, leaving him paralysed from the chest down.
When his parents, Hank and Charlotte Stifel, pressed doctors about what came next, the answers reflected the widespread belief that SCI was untreatable.
Christopher Reeve was already Superman, but the Reeve Foundation wouldn’t exist for another 14 years.
So, the Stifels decided to build their own, and the Stifel Paralysis Research Foundation launched later that year.
In the mid-1980s, Hank brought the Foundation under the umbrella of the American Paralysis Association (APA), where he helped establish an external scientific advisory council to review and advise its grant awards, funding research in a way that was completely novel to SCI – a “laboratory without walls.”
The scientific rigour helped expand the number of scientists and academics pursuing spinal cord research and encouraged the innovative work that would eventually upend the notion that there was nothing to be done for those living with paralysis.
When Christopher Reeve was injured in 1995, the APA was one of the first places that he and his wife Dana turned to for guidance.
The following year, he started the Christopher Reeve Foundation.
By 1999, the APA and Christopher’s Foundation came together as the Christopher Reeve Paralysis Foundation, which also added Dana’s name after her untimely death in March 2006.
Pushing the boundaries of what was accepted
The Reeve Foundation started as a grassroots movement by pioneers who refused to accept the long-standing belief that the spinal cord, once injured, could never be repaired.
Because of this view, SCI research was in its infancy in the 1980s and nicknamed the “graveyard of neurobiology”.
Today, however, the Foundation has funded more than $140million of research around the world.
By uniting the brightest minds in the field, the Foundation helped usher a new era of scientific inquiry focused on developing and delivering real-world treatments that would push the world toward real cures for SCI.
“The Reeve Foundation substantially changed perceptions about what was possible for spinal cord injury recovery and regeneration,” says Dr James D. Guest, professor at the Department of Neurological Surgery, The Miami Project to Cure Paralysis, and adviser to the Foundation.
“Through its support of cutting-edge basic SCI science and its role as a convener and credible arbiter of strong research, the field began to shift from an obscure specialty practiced by a handful of dedicated scientists in isolated labs to one of the most exciting and collaborative areas of neuroscience.”
Further, an important step was taken towards actual clinical implementation of discoveries through the establishment of the North American Clinical Trials Network (NACTN).
The network has enrolled more than 1,000 subjects to a data registry, and participated in the largest international clinical trial for SCI of the 21st Century, testing the drug riluzole.
NACTN actively collaborates with other clinical trial networks in Europe and Canada.
From ‘no hope’ to cures in sight
Building on a wealth of basic science discovery that had begun to unravel some of the most complex mechanisms of SCI and paralysis, in the mid-2000s, the Foundation zeroed in on an area of study with the potential to dramatically change what it means to live with paralysis: epidural stimulation, by which continuous electrical currents are applied at varying frequencies and intensities to specific locations on the spinal cord to
activate the nerve circuits and augment small residual signals from the brain.
Working with the earliest pioneers in this area, the Foundation launched The Big Idea with the University of Louisville in 2014 – a momentous step toward the expansion of its mission-driven outlook from just one cure to many, and a groundbreaking study that underscores the Foundation’s commitment to translating scientific results into tangible, quality of life gains for patients in the here and now.
The Big Idea is helping participants living with SCI dramatically improve their quality of life through improved cardiovascular health, bladder control, and other autonomic functions – and voluntary movement, including the previously impossible task of walking over ground.
Improved cardiovascular function is anticipated to be the first market indication pursued through the FDA for the technology, with data from the Big Idea supporting that application. To date, $9.4million funding for The Big Idea from the Reeve Foundation has been leveraged by the University of Louisville researchers to generate $31million in adjoining financial support for related research.
More recently, the Foundation has begun making forays into research-driven equity partnerships, such as with ONWARD, which has developed breakthrough technologies currently in global clinical trials that deliver individualised transcutaneous stimulation to the spinal cord in combination with intensive rehabilitation to improve arm and hand recovery (Up-LIFT study).
A second program uses targeted, programmed epidural stimulation of the spinal cord to restore movement and other functions. The results of the pioneering STIMO-BRIDGE Study, which highlights the use of ONWARD’s technology to enable people with even the most severe forms of spinal cord injury to walk, stand, cycle, and swim again, have shown what is possible.
In 2021, the Reeve Foundation created a strategic partnership with the UK’s International Spinal Research Trust (ISRT) to co-develop a research strategy with a joint focus on chronic injury, combination approaches and clinical translation.
This alliance, inspired by the speed at which solutions for COVID-19 have been delivered, seeks to take a coordinated, global approach to accelerate the processes of bringing meaningful treatments to those living with SCI.
“No other entity in SCI is engaged in the scientific pipeline at both the scientific and business support perspectives,” says Maggie Goldberg, president and CEO of the Reeve Foundation.
“While funding agencies support portions of the research continuum, they lack the ability to help advance research from the lab to bedside, and there is little critical assessment of product marketability.
“The Reeve Foundation is committed to filling these core gaps that have to date stymied the field.”
Support for people living with paralysis
In 2002, the Foundation’s National Paralysis Resource Center (NPRC) opened its doors with the leadership and vision of Dana Reeve, who, with Christopher, struggled to find resources to help their family build a new normal after his spinal cord injury.
Through the NPRC, the Reeve Foundation offers a free, comprehensive, national source of informational support for people living with paralysis – from SCI, multiple sclerosis, stroke, ALS, traumatic brain injury, and other causes – and their caregivers.
The NPRC is focused on helping clients overcome the day-to-day challenges of paralysis while trying to lead independent and fulfilling lives.
To date, the NPRC has served over 112,000 people across the US living with paralysis, their families, and caregivers with one-on-one assistance since its inception.
Visits to the Foundation’s website average three million per year and provide individuals with a wealth of information, including fact sheets, tool kits, a 400-page Paralysis Resource Guide and more, all translated into 12 additional languages.
ONWARD launches latest pioneering trial
LIFT Home Study explores potential for its ARC EX spinal cord therapy in a home-based setting
The development of pioneering stimulation therapy for people living with spinal cord injury (SCI) is continuing with ONWARD completing enrolment for its latest groundbreaking trial.
The LIFT Home Study is designed to study the safety and performance of ONWARD’s ARC EX therapy when used in the home.
ARC EX works by externally delivering programmed stimulation of the spinal cord to restore strength and function in people with SCI and other movement related challenges.
It has already been in trial in a medical setting through the Up-LIFT pivotal trial enrolling 65 people internationally ahead of schedule, despite the challenges presented by the COVID-19 pandemic, and is already yielding strong initial results.
Its ARC IM implantable technology is also in trial, with its STIMO-BRIDGE study enabling three long-paralysed patients to regain the ability to take steps independently after one day, and to swim and/or cycle after five months of rehabilitation.
The LIFT Home Study has enrolled 17 participants at five leading research centres in the United States – Craig Hospital in Denver, Colorado; Shepherd Center in Atlanta, Georgia; Spaulding Research Institute in Boston, Massachusetts; University of Minnesota, and University of Washington.
Participants were followed for four weeks to assess whether continued access to ONWARD’s ARC EX therapy is safe and can be used to achieve long-term benefit.
The trial builds further on the commitment of ONWARD, based in Lausanne in Switzerland, to regain function and independence for those living with SCI. Plans remain on track for its ARC EX technology to be commercialised next year.
Dr Candy Tefertiller, executive director of research and evaluation at Denver’s Craig Hospital is primary investigator, and said: “The LIFT Home Study is an important next step in understanding the potential benefits people with spinal cord injury may derive from continued access to ARC Therapy outside the clinic.
“We are pleased enrolment is now complete and we look forward to completing follow-up activities.”
“We are grateful to collaborate with these outstanding researchers to investigate new potential benefits and care settings for our ARC EX therapy,” said Dave Marver, CEO of ONWARD.
“This is another step in our journey to help people with spinal cord injury regain function and independence.”
ONWARD – making the impossible possible
CEO Dave Marver discusses its pioneering work in spinal cord injury and the new hope for people living with paralysis
The concept of three people living with complete paralysis regaining the ability to walk independently is something that, in the very recent past, would have been dismissed as being impossible – but through the work of ONWARD, this one-time ‘impossibility’ is now becoming reality.
For years, spinal cord injury has been regarded by many as the ‘graveyard of neuroscience’, where hope was in short supply and the outlook for those daring to dream of the day that may change was bleak.
But now, through the efforts of pioneers who have led the research breakthroughs that are now shaping reality, the ability of technology to change lives is being seen by the whole world, with people watching in amazement as paralysed patients rediscover the ability to move.
After being implanted with spinal stimulation technology developed by ONWARD – the first time its epidural electrical stimulation (EES) had been trialled in humans – all three participants who were part of the STIMO-BRIDGE trial were able to take steps independently within a single day.
After five months of rehabilitation, they were also able to use their legs to stand, walk, swim, and/or cycle. They also regained control of their trunk muscles.
Such colossal steps forward in SCI are now giving new hope to people living with paralysis – and are helping to show, rather than being impossible, what could become the new possible for the future.
“We were very pleased with the results of STIMO-BRIDGE, although we as a company are not going to be pleased with just impacting subjects in a clinical trial,” Dave Marver, CEO of ONWARD, tells NR Times.
“Our job and our unique role is to scale these therapies so they can provide benefit to hundreds of thousands of people with spinal cord injury around the world.
“These results show great promise, but we still have a tremendous amount of work to do to achieve our vision.”
And for ONWARD, that vision is to change the lives of people living with SCI globally, to enable them to enjoy and live their lives in the ways that matter most to them.
Established in 2014 to focus specifically on SCI, the venture has led truly groundbreaking research into this long-underserved area.
Founded by neurosurgeon Dr Jocelyne Bloch and Professor Gregoire Courtine, Swiss-based ONWARD has taken decades of research and translational science to bring to fruition two viable commercial solutions.
With its ARC EX and ARC IM devices, ONWARD – backed by many of the leading European life sciences venture capital investors – has led the charge on redefining the outlook for SCI patients.
Its ARC IM, recently subject to the STIMO-BRIDGE trial, consists of an implantable pulse generator and lead that is placed near the spinal cord, controlled by wearable components and a smartwatch. A pivotal trial is set to begin within the next 12 to 18 months.
The ARC EX is an external, non-invasive wearable stimulator and wireless programmer, which targets the rediscovery of upper body movement. Currently subject to the international Up-LIFT trial – the largest SCI trial of its kind – it completed enrolment of 65 participants ahead of schedule, despite the many challenges presented by the COVID-19 pandemic.
Currently being trialled at sites across the world – including in the NHS Greater Glasgow and Clyde (NHSGGC), as well as Neurokinex sites in England – the aim, pending necessary approvals, is for a commercial launch in the first half of 2023.
But while the excitement at the potential of ONWARD is palpable, with the first introduction of its technology into rehabilitation centres across the United States, UK, France, Germany and the Netherlands potentially barely a year away, Dave is keen to ensure expectations remain realistic.
“Certainly this will give hope to people, and I think the fact we enrolled all 65 subjects in Up-LIFT ahead of schedule, despite all the challenges of clinics closing and difficulties with quarantines and so forth, speaks to the enthusiasm that the clinical community has for this therapy,” he says.
“They have really embraced it, as the participants did in STIMO-BRIDGE. We, and they, are showing what is possible.
“But I do think it’s important to not overstate it, I don’t want to create false hope, because these subjects really committed themselves to the therapy and to the rehabilitation process.
“I think there is great potential that many people with paralysis will be able to stand again with the benefit of our therapies, maybe take some steps. But then it really depends on their particular circumstances and their overall level of health, their willingness to commit to rehabilitation, whether they can go further than that.
“And, of course, not everyone with spinal cord injury, desires necessarily to walk again, they may have other priorities. And that’s why ONWARD is also committed to addressing other challenges that affect the quality of daily life, such as blood pressure and trunk control and use of better use of the upper extremities.
“And then in the future, we’ll be looking at incontinence and restoration of sexual function, the whole battery of things that people with SCI have to contend with.”
Through its longstanding and deep-rooted commitment to the SCI community, ONWARD has secured relationships with of some of the world’s leading organisations in this area, including the International Spinal Research Trust and the Christopher & Dana Reeve Foundation. The latter has even become ONWARD shareholders, to help further its pioneering work.
For Dave, while the word ‘pioneering’ is well-used, for ONWARD, it is also well-earned.
“I think we are seen as pioneers in this area because we’ve chosen to focus on serving the spinal cord injury community,” he says.
“It’s a smaller population than other populations with movement-related challenges, like stroke and Parkinson’s, for example. Most businesses orientate toward the largest potential markets, whereas our founders really had a passion for helping people with spinal cord injury.
“And that remains the core vision, that was their raison d’être, and it’s with that commitment and determination that we have achieved such progress.
“We haven’t partnered with existing spinal cord stimulation companies, we’ve developed our own technology platform that is built for the specific purpose of not stimulating the spinal cord for pain management, but stimulating the spinal cord to restore strength and function.
“But I think the progress we have made also reflects the close collaboration that we enjoy and value with our scientific partners. We have a group of people so committed and driven by our mission, which I think is why we make the progress we have done.
“We develop that lead together in a very rigorous way, with our vision at the heart of that.”
Constantly looking to the next innovation and how its technologies can be even more beneficial to those who need them, ONWARD is also considering how, post-commercial launch, its ARC EX could be used remotely.
“Later, we’ll be seeking approval for it to be used in people’s homes, so they can conduct periodic sessions maybe once or twice a week in their homes to continue gains that they have observed in the clinic, and build on those gains,” says Dave.
“We’ll be looking at a successor study to Up-LIFT which would look at safety and performance when used in the home.
“Without question, it’s important with spinal cord injury to be able to operate this technology, which is why we were keen to incorporate voice activation into the system. Both of our platforms can be programmed by the clinician, but in the future may be operated by and used by the injured with their voices.
“But very importantly, we do our best to connect as frequently as possible with people with injury to inform the design of our product platforms, and inform our future direction as a company.
“We consider ourselves part of the community, so that feedback to ensure the design of our technologies is really usable and accessible, in my view, is vitally important.”
And with such huge advances and new-found hope for the future, many conversations have turned to whether SCI may be curable.
“I wouldn’t rule anything out, with human ingenuity and so forth, but what I would say is more realistic at this point is to have optimism – quite a bit of optimism – that movement and strength and function can improve, and in some cases, be restored with the benefit of therapies like ours,” says Dave.
“Perhaps other therapies and technologies will emerge, if you look at how far we have come. But for us, our vision is to support the SCI community around the world through our therapies, and we’ll continue to do that.
“We’re making steady progress across all areas of our plan, and while what we’re doing is difficult and complex, I’m confident we will come through.”
Walton Centre secures Centre of Excellence spinal status
Trust wins recognition for its work in fully endoscopic spinal surgery
The Walton Centre NHS Foundation Trust has received Centre of Excellence status for its work in fully endoscopic spinal surgery.
The award, given by RIWOspine, the manufacturers of the innovative fully endoscopic equipment, comes after the Trust’s charity funded the project in 2020.
The procedure is used to treat spinal conditions such as sciatica due to disc bulges and spinal stenosis, along with other ever evolving newer surgical indications.
As part of the recovery process for some of the procedures, patients can be up and walking around merely hours after the surgery. In many cases, patients can go home the same day if they have recovered enough.
Gaining Centre of Excellence is a gold standard, making the hospital one of only a handful to achieve the status, and comes in recognition of its work with patients across the wide geographical areas of Cheshire, Merseyside and North Wales. It is the latest innovation to be offered by The Walton Centre, the UK’s only dedicated specialist neuro NHS Trust.
Consultant spinal surgeon Mr Narendra Rath, one of few surgeons in the country who can perform this type of surgery, said: “I am delighted and so proud of the team here at The Walton Centre.
“It’s been an extraordinary two years, but the team has worked hard to bring this service to patients who need it.
“Fully endoscopic spinal surgery has provided us with skills to tackle spinal problems in various ways and it is not only about discectomy procedures.
“Being keyhole, the procedure causes minimal tissue damage and can improve patient rehabilitation. It’s a pioneering branch of spinal surgery, practiced in only few centres across the world, and has a potential to transform future spinal surgery.”
One patient, 26-year-old Ciaran Rooney from Wirral, started to have trouble with his back a couple of years ago.
Mr Rath operated on Ciaran towards the end of last year and he was able to go home the same day.
“Mr Rath assessed and got me in for the operation quickly. Before that I was in an incredible amount of pain, I was limping it was that severe,” recalls Ciaran.
“Hours after the procedure the team got me up and about walking to see the progress I was making.
“I couldn’t believe it and I feel so lucky to have had the surgery, it’s got me back on my feet – literally!”
The innovative endoscopic equipment, made by RIWOspine, involves keyhole technology, which allows the Trust to deliver precision spinal procedures.
The tools are paired wirelessly with high definition 4K monitors to enable safe procedures with minimal invasion, which may reduce the length of time patients need to recover in hospital.
The funding of this technology was made possible thanks to a significant legacy left to The Walton Centre Charity in 2019.
Andy Singh, head of RIWOspine UK, said: “We are very pleased to announce this Centre of Excellence award for The Walton Centre.
“The staff at the hospital have worked closely with us, and their hard work and professionalism has resulted in this award.
“This latest generation of full endoscopic spine surgery, allowing the interlaminar surgical approach has meant many more patient pathologies have been treatable, where once, these patients required open surgery.”
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