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Superman versus paralysis




Matthew Reeve (second right) with siblings Will and Alexandra at a 2009 fundraiser with Meryl Streep and singer Colbie Caillat (right)

This December marks 40 years since Christopher Reeve first charmed the world as a shy reporter turned man of steel.

For many, his was the ultimate portrayal of Superman – outshining the many caped pretenders since.
His enduring quality extends far beyond popcorn culture, however.

In the global war against paralysis, his name remains as powerful as the great Metropolis defender himself.

Even 14 years after his untimely death, his memory still inspires and motivates people battling back from catastrophic injury.

“I think his story really resonates with people because of the courage and resilience he showed in handling his injury and paralysis,” his son Matthew Reeve tells NR Times.

“He was so closely associated with Superman and then his injury humanised him. Also, his drive was unrivalled and his daily routine was astonishing.

“With the amount of care required because of the level of injury, and being on a ventilator 24/7, he
was still able to get out there to spread the word, raise awareness and funds and inspire people. There was a broad public response to that and it was amazing to see.”

His father’s longest running role, as a change agent in the spinal injuries field, lives on through the growth of the foundation he started with his late wife Dana.

Matthew, 38, is in the UK as part of its first foray outside the US.
The Christopher and Dane Reeve Foundation’s NeuroRecovery Network (NRN) develops and delivers therapies to promote functional recovery and improve quality of life for people with paralysis.

It combines new technology and scientific research to broaden its understanding of neuroplasticity.

Its work is underpinned by Christopher Reeve’s firm belief in the power of activity-based therapy in promoting functional recovery after spinal
cord injury.

There are 11 NRN facilities in the US and, in 2016,
it signed its first overseas agreement, with UK activity-based neuro-rehab provider Neurokinex.

The British organisation, which has centres in Gatwick, Watford and Bristol, was able to begin offering the NRN protocols of locomotor training and neuromuscular electrical stimulation as an affiliate of the foundation.

The next step is a new Neurokinex Kids facility for children living with paralysis, which opened in April this year in Gatwick.

The NRN describes its UK activities as the “first endeavour to establish a global network of rehab facilities united under a common protocol”.

And Matthew is hopeful of further expansion of his dad’s legacy in the coming years.

“The goal of our network is to share best practice, to create valuable data and to adjust our protocols and procedures accordingly over time. If we don’t have standardised practices, then we can’t correlate what’s working and what’s not.”

But the Reeve Foundation is working on a much greater goal too. After his injury, Reeve senior had a vision for “a world of empty wheelchairs”.
He and his family got to work in supercharging the search for a paralysis cure.

Matthew says: “A world of empty wheelchairs is of course an ambitious vision, but nothing of any consequence is ever accomplished without bold vision. Our main goal is to put ourselves out of business.”

A mass liberation of paralysed people from their wheelchairs may seem a distant goal. 
Rapid progress on several scientific fronts, however, suggests it will come to pass eventually; it may not be as Superman envisaged though.

“My dad used to talk about a singular cure that applies to everyone but we’ve known for a long time that this probably won’t be the case.

“Every injury and every injured person is different. It’s really exciting in this field to see the changes happening to patients and the improved quality of life that some of these interventions can bring.”

Matthew’s optimism comes from various sources. “Some of the most encouraging areas of research are at the intersection between technology and biology where there are lots of early stage and advanced approaches.”

Among them is epidural stimulation (ES) – a technology pioneered through the Reeve Foundation’s The Big Idea initiative.

ES involves continuous electrical current being applied at varying frequencies and intensities to specific locations on the lower part of the spinal cord.

A device is implanted over the dura (the protective coating) of the lumbar cord where the central pattern generator (CPG) exists.

The CPG acts like a mini-brain within the spinal cord and is able to interpret sensory information. ES activates the nerve circuits in the spinal cord to provide signals that would normally come from the brain.

Put simply, commands given using a smartphone-sized remote control – like “move my right leg” – have been shown to result in movement.

In 2014, the Reeve Foundation unveiled a study in which four young men living with spinal cord injury recovered voluntary movements and the ability to stand.

Each participant had a chronic motor complete injury, meaning they were completely paralysed below the injury level and were unlikely to recover. Efforts are now underway to take the findings closer towards a widely-available treatment.

A trial of 36 people began earlier this year which could help prove to the US Food and Drug Administration that ES is both safe and effective.

“Without scientifically sound research, there’ll be no stamp of approval, no insurance coverage, no Medicaid coverage and no devices,” says the foundation.

Beyond that, ES could have global appeal, with The Big Idea aiming to make the therapy available to men and women living with paralysis worldwide.

Matthew says: “It’s an area we are really committed to because of the astounding results it can achieve. Other hot areas of research include cell transplant and 
cellular circuitry.”

Also being continually developed with the help of the foundation is locomotor training. This is offered across the NRN centres, including those now in the UK, to retrain people to stand and walk. It involves 
step training, over-ground walking and “community ambulation” training.

While the technology is increasingly well established, it too is being pushed forward by the
Reeve Foundation.

“Everything can be improved; if not at
an advanced level then in terms of being standardised across the NRN. This is the point of trying to amass as big a data set as possible.

“By standardising these protocols and having an umbrella under which all of this research is carried out, we can make sure it gets better and better over time.”

Standardisation of treatments for paralysis
is hugely important to the foundation. Participants in the NRN become part of a database that documents comprehensive medical information about the progress of each patient.

This enables the NRN to accurately measure outcomes and track the tangible impact
of different therapies.

Findings from the database are shared through peer reviewed publications in scientific journals.

A willingness to collaborate is fundamental in the hunt for a paralysis cure, Matthew believes.

“My father was emphatic about this. He 
used to get so frustrated when he talked to researchers in different sciences and found that people were working on similar things and not really sharing their information.

“Resources are so limited in this field and people need help now. There’s a ticking clock and so we need to make sure resources are used as efficiently as possible and that time isn’t wasted.”

An international research consortium championed by the foundation has helped
to close these gaps between labs pursuing various avenues of potential paralysis treatments. Wider changes have also made
a difference.

“We’ve come a long way. The world is much more connected now and I think there is a collaborative approach to the field now.

“When my father was alive he couldn’t have foreseen the importance technology would come to play in spinal cord injury research – and in activity-based therapy in terms of helping people recover motor function and secondary functions such as bladder and bowel control and sexual function.

“To embrace technology there has to be collaboration and it feels that things are much more open than when my father was alive.”

The panacea in tackling the world’s paralysis problem must surely be a treatment that delivers proven results cost-effectively. Matthew agrees that finances are an important consideration.

“The science is ahead of the money and always has been. The more we collaborate and share resources, the faster progress 
will happen. Even in the developed world the cost of treatment can be [prohibitive].

“There is also a question of scale in replicating and maintaining the high level of quality and making sure protocols are adhered to. There are different regional and national systems, whether they are private or public, subsidised or not. Our goal is to prove these treatments are beneficial beyond question.”

This means ensuring that “people don’t have to fight for access to activity-based recovery and that local and national government bodies come to understand that the long-term benefits outweigh the cons and that there will be savings in the future”.

While it is backed by significant clinical expertise and leadership personnel, the Reeve Foundation is very much a family affair.

Matthew’s official title is VC for international development, although his role is juggled with his day job in the TV and film industry
as a producer/director and screenwriter.

His brother William and sister Alexandra are also actively involved in the foundation’s work and fundraising efforts.

The experiences of Matthew and his relatives as family members of a spinal cord injury
case have shaped the work of the foundation.

Christopher Reeve shattered his first and second vertebrae when his horse pulled up at a fence jump in 1995, throwing him head-first to the ground.

He was paralysed from 
the neck down. Matthew was 15 at the time. In the aftermath of the accident, Matthew’s stepmother, the late American actress and singer Dana Reeve, searched in vain for a course of action.

“She found there was nowhere to get information. These were the pre-internet days and there was no centralised database of cases.

“As a result of her frustration, under her vision, guidance and leadership, she created the Paralysis Resource Center; a toll-free, manned phone number which families of newly injured patients can call to talk to someone. It gives them a helping hand through a very difficult time.

“We try to provide services which, through our family situation, we found lacking.”

Online add-ons like maps to local services have since been incorporated to what is now a growing resource of information.

The foundation’s Quality of Life Grants Program, meanwhile, has awarded more than US$23m in financial support to fellow non- profits aligned with its mission.

“My father was always mindful that our family was abnormal compared to most families going through this. He was a celebrity and
we certainly had more resources than most. He had a very good insurance policy and an excellent rehabilitation centre nearby.

“He was always very conscious that not everyone was as lucky as he was and we definitely keep that in mind as we try to create services to help people with paralysis.”

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