We have one goal: Make spinal cord injury curable. Every euro you give is a euro towards that goal. #1 SUMMER 2015
SPINAL CORD RESEARCH FOUNDATION Paralysed and Pregnant
Motherhood in a wheelchair
Charge of Hope
Electrical stimulation of the spinal cord
Biking for Change
A 5,499-kilometre donation
“Knowing why we do it” For 22 years, Professor Armin Curt’s sole mission has been to find a cure for spinal cord injury
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IMPRINT Wings for Life International Spinal Cord Research Foundation Fürstenallee 4 5020 Salzburg Austria Phone: +43-662-6582-4244 Email: firstname.lastname@example.org Company Registration: FN 251592p Legal Form: Private non-profit foundation Register Court: Landesgericht Salzburg (Jurisdiction) Chief Executive Officer: Anita Gerhardter Wings for Life United Kingdom
Dear friends and supporters, Here it is! Our very first issue of Wings for LIFE, a magazine that will give you a profound insight into the work we do, and the stories that motivate us to drive forward.
155-171 Tooley Street London SE1 2JP Great Britain UK Registered Charity No: 1138804 Contributors: Vieri Failli, Wolfgang Illek, Rosi Lederer, Verena May Editors: Marco Gröbner,
Stories like those of Nico Langmann, who, at 2, had just learned to walk when he was injured in a car accident, and Johanna Welin, who was left paralysed after a sporting accident. Stories like that of Lukas Knoll and Bernhard Schaffer, who cycled across America in an inspiring campaign to raise funds and push Wings for Life’s research onwards.
Stefanie Spreitzer Creative Director: Dominik Uhl Designers: Birgit Lohmann, Paul Stuefer, Martina Veider Cover Photo: Stefan Weiß; Photo: Alexander Maria Lohmann
Photo Editor: Markus Kučera Lithography: Clemens Ragotzky Translation: Desmond Tumulty Chief Sub-Editor: Nancy James Deputy Chief Sub-Editor: Davydd Chong Sub-Editor: Olivia Rosen Managing Editor: Lisa Blazek Producer: Matthias Zimmermann
Because that is our main focus. The research. Their cycling efforts and your donations offer scientists working on an exciting project in the USA and Professor Armin Curt at the University Clinic of Balgrist in Switzerland the chance to keep working towards the end of spinal cord injury, the cure. This publication is an expression of our gratitude to the fundraisers, to the scientists and to you, our readers. Thank you from the bottom of our hearts.
Creative Consultant: Boro Petric Many thanks to Offset 5020, Sappi Fine Paper and Red Bull
Do enjoy reading this magazine! With my best wishes,
Media House for the cost-free production of this magazine.
Anita Gerhardter ... LIFE | 3
#1 SUMMER 2015
The speed in kilometres per hour at which a neuron transports signals. That’s quicker than a Formula 1 racing car.
The central nervous system in numbers
One Woman. One Man. One Kiss
How a photograph of a wheelchair user and her boyfriend went viral on social media
Year of Records
Facts and figure from Wings for Life World Run 2015
“It was as if I’d lost my identity”
The estimated weight of the human brain in grams. (A lizard’s brain is 0.08; a whale’s, 6,930)
Eleven years ago, a snowboarding accident left Johanna Welin paralysed. But despite all the odds, the young woman went on to become an Olympic basketball champion and, six months ago, a first-time mum
Did you Know…
… many paralysed people can’t sweat. Wolfgang Illek explains how he cools his body down
“I am always busy doing research”
The number of connections there are for each neuron (nerve cell) in the human brain.
Professor Armin Curt on progress in spinal cord research, 60-hour working weeks, and the resilience of his patients
Charge of Hope
After undergoing epidural electrical stimulation treatment, a paralysed American moved his legs again. We spoke to his doctor, Susan Harkema, and looked into this promising therapy
Paralysed at Two
The diameter of a neuron (nerve cell) in metres.
At two, Nico Langmann’s spinal cord was injured in a car accident, but now he enjoys playing tennis. His story
To promote spinal cord research, students Lukas Knoll and Bernhard Schaffer biked 5,499km across the United States of America
A Good Year
Research-project selection is like good-grape picking – elaborate. And as with wine, it’s important to handpick projects with the greatest potential. In 2015, 45 projects fit into that category
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Photo: iStockphoto.com – Smolygin Vitaliy
An American Road Trip
The weight in grams of the human spinal cord. That’s less than three tablespoons of milk
The length in centimetres of the average human spinal cord
Good nerves: the central nervous system in numbers Our central nervous system is a marvel of nature and our body’s control system
There are up to one quadrillion synapses in the human brain. This number is comparable to estimates of the world’s entire ant population
The weight in grams of one large neuron, making it 200,000 times lighter than a grain of sand
The length in kilometres of myelinated nerve fibres in the human brain – enough to go around the Earth four and a half times
There are about one billion neurons in the human spinal cord. About the same number as the estimated population of Africa.
There are about one trillion neurons in the human brain. That’s around the same as the number of stars in the Milky Way.
... LIFE | 5
WINGS FOR LIFE WORLD RUN
One Woman. One Man. One Kiss. This photo, taken at this year’s Wings for Life World Run, was a great hit on social networks. Behind the loving gesture is the story of wheelchair user Mateja Pintar and her boyfriend, Peter Pustovrh. “We were surprised and very pleased with all the likes,” the 30-year-old from Slovenia said when asked about the photograph
slippery rock was Mateja’s downfall on a hiking trip with her family 15 years ago. She lost her footing for a fraction of a second, fell and damaged her spinal cord. “I was paralysed instantly,” she says, thinking back to the accident. It was a tough diagnosis for a teenager to deal with. “It hit me very hard. But looking back now, I think my family suffered more than I did. During my six months of rehab, I focused on my recovery and reorganised my life. You could say I was too busy to get depressed.” Other people, though, felt sorry for her: “They didn’t understand what life could be like for me or what I would be able to do still.” Just a year after her accident, Mateja started playing table tennis. “I fell in love with the sport straight away,” she says of her beginnings as a professional table-tennis player. Then there were the Paralympics. “For 10 years, the sport was the most important thing in my life.” Then, a couple of years ago, she lost interest. “For 10 years, the sport was the most important thing in my life, until I met Peter two years ago. Then things changed. It was time for a new chapter in my life,” says Mateja, a translator. She and Peter have been together for two years now. “The week of the Wings for Life World Run, Peter (a croupier at a casino) was working nights, but he was still adamant we would run the race together.” They managed 13km before the Catcher Car caught them. “This year was the first time we’d take part. We didn’t have a goal; it was just for fun.” And during the race, there was that kiss. But what prompted it? “The atmosphere was so relaxed, it just felt right. That’s why it happened.” Next year, they both want to compete again, but they don’t know where, yet, though.
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Photo: Samo Vidic
... LIFE | 7
WINGS FOR LIFE WORLD RUN
Year of Records Facts and figure from Wings
Photo: Stefaan Temmerman
for Life World Run 2015
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tonnes of bananas eaten (if we’re not mistaken, that’s 26,600,000 calories)
participants registered (same as a sold-out game at Barcelona’s Nou Camp football stadium, plus teams, staff and stewards)
litres of drinks consumed (enough to fill 1,000 standard bathtubs)
kilometres run (2.7 times the average distance to the moon)
The oldest participant competed in South Africa: she ran 7.24 kilometres, aged 95
33/10 The highest to the lowest temperature: 33°C (India), 10°C (Norway)
64.82 The winner in Sweden, Aron Anderson, notched up 64.82km, going further in a wheelchair than any of the able-bodied competitors in Sweden.
f sfo be h or th rlif eld e t ew on hir orl M d W dru ay in n.c 8, 2 gs f om 01 or 6 a Life . t
nationalities represented (the UN has 193 member states)
PR E Wo RE rld GI Ru ST w n, to ER
SPINAL CORD INJURY
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“It was as if I’d lost my identity” Johanna Welin has been a paraplegic ever since she suffered a serious sporting injury. In spite of her disability, she is the master of her own destiny as a wheelchair basketball player, a student of medicine and the
Photo: Phil Pham
mother of a six-month-old son
... LIFE | 11
SPINAL CORD INJURY
“I didn’t want my mum to know how bad it really was”
But in the days that followed, there was no more hiding the consequences. “An X-ray in the hospital revealed that my 12th thoracic vertebra had slipped back and damaged my spinal cord.” Then aged just 19, she was forced to lie still for two weeks. “I didn’t understand at the time exactly what had happened. It took a long time to process it. A year at least,” she admits. “The fact that my bladder and bowel no longer worked like they used to was a really big deal. That was a lot worse than not being able to walk.” She spent almost six months in rehabilitation in Gothenburg, learning how to adapt to her new circumstances and how to use a wheelchair.
Johanna trains for 12 hours a national team
hat he likes best is being lifted up,” reveals Johanna Welin as her sixmonth-old son, Ilja, grizzles. But the 31-year-old can’t get up to comfort him, having been in a wheelchair ever since a snowboarding accident. “Before my accident, football and snowboarding were my identity. When I finished school, I started work in a skiing area. It was totally my thing,” says the Swedish-born sportswoman, with a smile as she talks about her past. “DON’T TELL MUM” In January 2004, she landed on her back after a small jump while snowboarding. “I noticed straight away that I couldn’t feel my legs.” But she initially kept that to herself. “I didn’t want my mum to know how bad it really was.”
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BACK TO A DIFFERENT LIFE Johanna is ambitious and wanted to go back to the skiing area where she had the accident. Once she was done with rehab, she rented a flat and started working selling ski passes. “That helped me deal with it somehow.” She started playing wheelchair basketball at the same time. “I liked it straight off that people in wheelchairs played alongside able-bodied players. It made no difference.” She did a lot of training. “Then I wanted to go abroad and improve my German.” Johanna soon moved to the student halls of residence at the University of Innsbruck and commuted by car from Austria to Bavaria to do her basketball training at the University Sports Club in Munich. “I moved up from the second to the first team within one and a half seasons.” She now lives in Munich and trains with the national team for 12 hours a week. She’s also been studying medicine since 2010.
Photos: Phil Pham, private
week with the
... LIFE | 13
SPINAL CORD INJURY
Johanna at the Wings for Life World Run 2015 in Munich
Yes, women with spinal cord injury can have children, the reason being pregnancy is hormonal and not controlled by nerves. Nor do spinal injuries cause long-term damage to the menstrual cycle. But it can take time for it to return to normal after acute trauma. Uterine innervation occurs in the area between thoracic vertebrae Th10 and Th12. Therefore, it could be the case that pregnant women who have an injury above the Th10 vertebra don’t sense their foetus moving. Contractions of the uterus, ie labour pains, also often go unnoticed. Women with spinal cord injury are more likely to give birth prematurely. Even if the woman cannot actively push, a vaginal birth is still possible. In cases of flaccid paralysis, the birth process can be made easier because of the relaxed abdominal and pelvic floor muscles. Mothers also feel considerably less pain during delivery. By contrast, in cases of spastic paralysis, the delivery can be more complicated for the child due to the contracted pelvic floor muscles.
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A FUTURE FOR THREE Six months down the line, they have settled in well to family life. “My boyfriend, Benni, is at work all day. I manage to combine looking after our child, basketball training and university very well,” she says, in recognition of her own organisational talents. But there are everyday situations which take a lot out of Johanna. “I am very impatient. I often get depressed that there are certain things I can’t do or which take a long time, especially with the baby. Many things are just really awkward.” Ilja, she is sure, will become independent quickly and realise that there are certain things his mother can’t do. Johanna would have loved to teach her son football or snowboarding. “It’s a shame I won’t be able to now, just like I won’t be able to carry him around the house.”
“Nobody knew how my body would react”
Photos: Phil Pham, private
SPINAL CORD INJURY AND PREGNANCY: CAN IT WORK?
PRAM AND WHEELCHAIR “I postponed all my end-of-semester exams this time round. There was no other way,” she explains and smiles at Ilja, who has just fallen asleep. Johanna met her son’s father playing basketball. “We played on the same team, but he doesn’t have an injury.” Johanna knew that she could still get pregnant despite the paralysis. Yet they were still both surprised at first. “I was happy about our child, but it was really tough too,” she says when she looks back on being pregnant in a wheelchair. “Of course I sought the advice of a number of other mothers who are in wheelchairs. I wanted to know exactly what I was in for. But it’s hard to make predictions because it’s different for everyone.” The baby put increasing pressure on her bladder and towards the end of the pregnancy, the expectant mother was forced to lie down the whole time. “No one could say exactly how my body was going to react. But then I had a natural birth, and I was so happy when I held Ilja in my arms.”
“I was so proud when I first held Ilja in my arms”
... LIFE | 15
SPINAL CORD INJURY
Did you know…
…that many paralysed people cannot sweat? A
typical summer scenario. The car’s been getting hot all day in the blazing sun, you get in and next thing you know, there’s sweat pouring down you. Sweating can be a real nuisance. But it is a problem that I, for one, don’t have. I don’t sweat at all. The same is true for many paraplegics and tetraplegics because thermoregulation doesn’t work in our bodies. Why is that? To answer that question, we need to take a closer look at the autonomic nervous system (a system of two parts: the sympathetic and the parasympathetic nervous system), which controls all the processes in the body that are not voluntary, such as the heartbeat, breathing, digestion and even sweating, too. Specific sympathetic nerves that leave the spinal cord between vertabrae Th3 and L2 are responsible for sweating. Any patients with a spinal cord injury below the L2 vertebra can sweat as normal. Patients whose injury is between the Th3 and L2 vertebrae can only sweat in certain body areas. And people like me, with full paralysis above the Th3 vertebra, cannot sweat at all. You might think I’d struck lucky. But you couldn’t be more wrong. The human body requires a consistent temperature to be able to function properly. The enzymes – protein biocatalysts – which control and maintain many of our vital functions only run smoothly within a narrow temperature range. If my body temperature leaves that range, I get weak and lethargic. I suffer dizziness and it becomes hard to breathe. In extreme cases, I might even suffer heatstroke. Normally, the body will regulate its own temperature automatically. Sensors detect that the body temperature is too high and transmit that information to the autonomic nervous system. That in turn broadens the blood vessels so that warm blood can cool down on the surface. Moisture is also drawn off to produce sweat. Then, the sweat glands all over the body’s surface are activated and emit moisture onto the skin. The excess body heat transforms that sweat into vapour. The chill of evaporation takes the heat away from the body. You then sweat until your temperature comes back down to its optimal 37° C. When you can’t sweat naturally, you need to think of other ways to get your body temperature back down. I use cooling elements or wet cloths, for example, and place them around my neck or over my face. I also have a sprayer for watering plants so I can mist a film of moisture onto my skin. And I have to think ahead about whether there’s air conditioning or if I can find a shaded parking spot for the car. It’s all quite a fuss. I’d much rather have sweaty armpits.
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Wolfgang Illek is a project Photo: Peter Luckeneder
manager at Wings for Life. He stays cool in the office with ice-cold cans
... LIFE | 17
“I am always busy doing research” Armin Curt has devoted more than 22 years of his life to finding a cure for spinal cord injury. In this interview, the professor shares with us what he has learnt from his many patients and how agonising it is for him as a doctor that he hasn’t as yet been able to cure them
Are you still as passionate now as when you started? I would say even more so. We have 40 beds for paralysed patients at the Balgrist University Hospital. I’ve known many of my patients for 20 years. I’ve learnt a lot and have enjoyed plenty of success. We can now rehabilitate patients with full paralysis well. They can become independent, look after themselves and live as long as the ablebodied. But the fact that we can’t yet cure spinal cord injury is deeply troubling and the motivation I need to come into work every day. How are your research projects different from others? It’s important for me to focus on clinical, translational research. Results from the basic research are then carried over into pre-clinical development programmes. Having contact with the patients is very important for me. Having contact with the patients is also very important for me, so I insist my students work with patients regularly to get a real picture of paralysis. They need to know what they’re researching and why, 18 | WINGS FOR ...
and to understand what it means to live with spinal cord injury. What progress has spinal cord research made generally? In the past, the view was that the spinal cord is best left alone. It was seen as too dangerous and the consequences too unpredictable. In one study, we introduced stem cells into the spinal cord and now we know that we don’t have to leave the spinal cord alone, even in cases of spinal cord injury. There is something we can do. We’ve also come a long way in how we prepare studies. We understand the typical course of events better, and very soon after an accident we are able to predict what will happen to a patient. And we know more about how those patients will respond to the various treatments available. The EMSCI * – a European network – is very good now and everything is working well. We’re just waiting for the “magic intervention” to come to light so that we can get going. What does Wings for Life mean to you? Research is expensive, complex and takes a long time, so it’s incredibly important to have someone on board who can make it all go faster. That doesn’t mean that the process is less rigorous, but it does mean that we can react more quickly and sponsor more selectively. The ability of Wings for Life to respond flexibly and adequately is much greater than elsewhere, which also gives us hope.
Armin Curt Medical director of the Spinal Cord Injury Centre at the University of Zurich and Balgrist University Hospital. He has been a member of the Wings for Life advisory board for many years and this year he also became clinical director
* emsci.org The European Multicenter Study about Spinal Cord Injury brings together research projects from
Do you ever actually switch off? People working in basic research and clinics
23 cities in eight countries
Photos: Stefan Weiß
rofessor Curt, why did you choose to specialise in spinal cord injury? It happened by chance, actually. I hadn’t been especially interested in spinal cord injury until I got to hear of the Paraplegic Centre in Zurich. After that I thought it would definitely be an advantage for me as a neurologist to gain some experience there for a year. I immediately found the work fascinating and I’ve been there now for 22 years.
“Having contact with the patients is very important for me. We need to know what we’re researching”, says Professor Curt
don’t work from 8 to 5. I often work long days. I do 60 hours a week on average, chiefly because there’s so much exciting stuff to work on. My wife is very generous on that score. We try to do outdoor sports with our two sons on a regular basis. This may often involve hiking or skiing, but because of my profession, I am always aware of the dangers, on the slopes in particular, and that something might happen … But I manage to switch off and enjoy the moment. What is the meaning of happiness for you? For me personally, happiness means being healthy and having a good relationship and
family. But happiness can be interpreted in many different ways. Contrary to popular opinion, paraplegic centres are not depression wards. According to one large study, the risk of depression is no greater among paraplegics than it is in the rest of the population. Isn’t that amazing? Of course some people are sad or angry that it’s happened to them. But after a period of time, many are able to accept their fate. The atmosphere and interaction among spinal cord injury patients isn’t negative. They’re good listeners and in fine mental shape. They’re an interesting and special group of people who impress me deeply. ... LIFE | 19
THEMA SPITZMARKE EPIDURAL STIMULATION
When the stimulation is switched on, paralysed patients can make certain voluntary movements
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Charge of Hope Epidural electrical stimulation is what everyone in the field of spinal cord research is talking about right now, and several institutes around the world are currently working on it. The Christopher & Dana Reeve Foundation and Wings for Life are jointly sponsoring a clinical research project on the technology in the US
Photo: Christopher & Dana Reeve Foundation
t all began with a single toe. Doctor Susan Harkema from the University of Louisville remembers her patient’s exact words: “Hey, Susie, look at this – I can move my toe.” Rob Summers had been paralysed from the neck down following a car accident and was told he would never walk again. But within just weeks of Dr Harkema applying an electrical stimulator to his spinal cord, the unimaginable had become possible: Rob was gradually regaining movement in his limbs. Rob was the first of four fully and chronically paralysed patients who have been treated to date with the experimental therapy of epidural electrical stimulation and intensive rehab. THE THERAPY EXPLAINED Epidural stimulation involves applying a continuous electrical current to the lower part of the spinal cord. The electrical stimulation is provided by a small electrode chip implanted over the dura (protective coating) of the spinal cord. A remote control roughly the size of a smartphone controls the frequency and intensity of the current. When used in combination with intensive rehab, the electrical stimulation enables paralysed patients to make certain voluntary movements. ... LIFE | 21
Measuring muscle activity and strength at the Human Locomotion Research Center laboratory at the University of Louisville
BENEFITS FOR THE PATIENTS The experimental treatment has produced positive effects on the autonomic nervous system as well as the musculoskeletal system: Wellbeing – an improvement in the patient’s overall quality of life Temperature – better regulation of body temperature Sexual Function – partial recovery of sexual functions Bladder – improved bladder and bowel function control Movement – partial movement of the lower limbs THE MECHANISMS The spinal cord contains networks of nerve connections that are capable of performing certain movements independently of the brain. Reflexes are a good example. Epidural stimulation taps into this ability. Electrical pulses can reactivate the neural circuits and inactive nerve fibres even if the connection to 22 | WINGS FOR ...
the brain is impaired. It could be that electrical stimulation strengthens the residual signals to meet the required activation threshold. The patient then once again becomes capable of moving his or her limbs to some degree. THE NEXT STEP: CLINICAL STUDY Dr Harkema’s research project is now being extended and controlled via a study called the Big Idea, which will involve a larger number of paralysis patients. A special group of eight patients within the study is being financed by Wings for Life directly. There are great hopes that epidural stimulation will continue to be a success and help millions of people like Rob Summers.
Photo: Christopher & Dana Reeve Foundation
“The treatment changed my life”
INFO BOX Physicians are trying to rouse inactive nerves using stimulating devices and electrical impulses
The History of Epidural Stimulation Fifty years of research and teamwork have shown
The stimulator is implanted in the lumbar area, where there is thought to be a central pattern generator (CPG). This is like a small brain that is capable of interpreting sensory stimuli independently.
The electrical pulses act as an amplifier and, to some extent, awaken the inactive nerve cells in the spinal cord.
Graphics: J端rgen Rabatscher
THE BIG IDEA Project leader: Dr Susan Harkema Initiator: Christopher & Dana Reeve Foundation Study due to start: Early 2016 Duration: Five years Location: Louisville, USA Number of patients: 36 Overall cost: at least $15 million
that epidural stimulation technology and therapy could one day help paralysed people walk again. A journey through time with small steps and a big goal 1965 The gate control theory is born. It states that pain signals can be managed and reduced if certain stimuli are applied to the spinal cord. Prof. Ronald Melzack | McGill University, Montreal, Canada Prof. Patrick D Wall | Cambridge, Massachusetts, USA
1969 A spinal locomotion centre (network of nerves that control movement) is discovered in the lumbar spinal cord. Prof. Sten Grillner | Karolinska Institute, Stockholm, Sweden 1971 The first epidural spinal cord stimulator is implanted to treat chronic pain. Prof. C Norman Shealy | Gundersen Clinic, La Crosse, USA
1981 The structure and function of the locomotion centre discovered earlier is presented. It is named the central pattern generator (CPG). Prof. Sten Grillner | Karolinska Institute, Stockholm, Sweden ... LIFE | 23
EPIDURAL STIMULATION 1987 Given the right sensory stimuli on the CPG, paralysed cats can get up and walk again. Prof. Serge Rossignol | Université de Montréal, Canada
1994 The first practical indication of a CPG: hyperextension of the hips triggers a walking movement in a patient with chronic spinal cord injury. Prof. Blair Calancie | SUNY Upstate Medical University, USA 2004 Research in Vienna demonstrates that epidural stimulation also changes the muscle response in the legs. The project was one of the first to be sponsored by the newly established Wings for Life. Prof. Milan R Dimitrijevic | Baylor College of Medicine, Houston, USA Prof. Helmut Kern, Prof Winfried Mayr | Medical University of Vienna, Austria 2009 Paralysed rats can make relatively coordinated walking movements and support their own bodyweight under epidural stimulation. Prof. Grégoire Courtine | Swiss Federal Institute of Technology, Lausanne, Switzerland
2014 This experimental combined therapy has great success with three other patients. In addition to voluntary movements, there were improvements to the patients’ autonomic nervous system. Prof. Susan Harkema | University of Louisville, USA
2016 Clinical research project The Big Idea, involving 36 patients, is due to start early in the year. Prof. Susan Harkema | University of Louisville, USA 24 | WINGS FOR ...
1992 A clinical practice discovery: intense movement training improves the ability of patients with incomplete paralysis to walk. Prof. Anton Wernig | University of Bonn, Germany
1998 An epidural stimulator is used on a completely paralysed patient for the first time. The stimulator triggers rhythmic leg movements that the patient has no control over. Prof. Milan R Dimitrijevic | Baylor College of Medicine, Houston, USA
2006 Sensory response to the CPG allows for adaptations to be made to movement patterns to suit the actual environment – in case of obstacles or an uneven surface, for example. Prof. Serge Rossignol | Université de Montréal, Canada
2011 A patient with complete motor paralysis and partial sensory paralysis regains voluntary movement after seven months of epidural stimulation treatment and training to help them stand. Prof. Susan Harkema | University of Louisville, USA
2015 A flexible stimulator – the e-Dura – made of soft polymers and malleable gold is in development. The e-Dura doesn’t just adapt to the shape and movement of the spinal cord, it can also release pharmacological substances locally. Profs. Stéphanie Lacour and Grégoire Courtine | Swiss Federal Institute of Technology, Lausanne, Switzerland
“Rethink everything” Our nervous system may control body movements differently from how we previously thought, says Susan Harkema
hanks to Susan Harkema and her team, four completely paralysed patients have been able to voluntarily move their legs again. Now the American neurologist and epidural stimulation specialist is putting her findings to the test with The Big Idea, a study involving a further 36 patients.
What are the greatest challenges? Four very specific areas: receiving sufficient funding, getting the go-ahead from the authorities, having access to the right technology and training the research team. Susan Harkema, neurologist and
Dr Harkema, what was it like when the first patient was able to move his leg? It was shocking and mystifying. At first I didn’t believe it and thought it was the stimulation directly moving the leg. But then I had him lay back, close his eyes and move on my command. And, yes, it worked again. It was astonishing and made me reassess how the human nervous system controls movement. The spinal cord must have a very significant level of control of movement for this to occur in someone who, as far as we can detect, is receiving no input from the brain to that area.
professor at the University
How many people are working on the study? I would say at least 50, including investigators, research staff, collaborators, physicians, therapists, and advisory board members.
* Food and Drug Administration, an American federal agency
What are the criteria for selecting patients? In general, the person must have significant deficits in cardiovascular function and be unable to stand or move all of the joints of their legs voluntarily. These most likely would be people with ASIA A, B or C classifications ** and most often are people with upper thoracic or cervical injury. However, the criteria are based on the deficits, not the level or ASIA classification exclusively.
Photo: Kyle Gustafson
When will you start work on The Big Idea? There are a few preconditions for such a large study. The most important is approval from the FDA* and the relevant ethical review commission. Then you need support from technology companies for the electronic equipment and availability at the hospital. And, last but not least, you need enough patients who both fit the criteria to be included in the study and can spend a certain amount of time with us here in Louisville. We are working on all of these now and will be able to start when we have reached all these objectives. How long have the preparations taken? Many months. We began with the early design of this study almost two years ago. We brought in experts in the field, set up an advisory board and revised the protocol based on all of their input. We have also learned a tremendous amount from ongoing studies we are doing in the laboratory now to help us prepare for a larger cohort of people with severe paralysis.
system for the severity of loss of function, as developed by the American Spinal Injury Association: A = Complete, no motor or sensory function is preserved, B = Incomplete, sensory but no motor function is preserved, C = Incomplete, motor function
What’s the breakdown of patients in terms of sex and age? We won’t know that until we complete recruitment. However, most people with SCI are male and below the age of 50, so it’s likely this group will be represented more. There’s normally a control group which isn’t treated or doesn’t receive medication. How will that be managed in this case? Each research participant will serve as their own control. Other control groups will compare the effects of stimulation alone to stimulation with intensive task-specific training (voluntary movement or standing).
... LIFE | 25
SPINAL CORD INJURY
Paralysed at two Nico Langmann was just a small child when his spinal cord was damaged in a car accident. Now, several years later, this active, fun-loving sportsman is sitting in front of us to talk about his fighting spirit, hand-eye co-ordination and lifelong dreams “On that same stretch of road, a novice driver had crashed into a safety barrier.” The driver failed to switch on his hazard lights. His car was there on the road in the dark. “Then we drove up to the scene of the accident a short while later,” Nico explains. His mother tried to avoid the car, but went into a spin in the icy conditions. “There was a bus in the opposite lane. The driver had parked because he wanted to help the driver who’d had the accident.” The young family’s car ploughed into the stationary bus. “There didn’t seem to be too much wrong. At least not at first,” he says. Nico’s mother had broken her leg and his brother had damaged his ankle. “The impact of the crash broke my car seat,” Nico continues. In the hospital they only diagnosed a broken thigh.
can’t remember all that much because I was still so small,” Nico Langmann says right at the start of our interview. Now 18, he only knows the precise course of events from what others have told him. It happened in February 1999. Nico was not yet two when his mother was out in the car with him and his older brother. “We were driving from Vienna to the Tyrol. It was already dark and there was heavy snow.” The difficult driving conditions were a concern even for experienced drivers.
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Nico is ambitious and lets nothing get in his way
FIGHTING FOR MOVEMENT “I was prescribed rehab,” he says. But it was difficult because all the rehabilitation centres declined to treat Nico. “They simply weren’t set up to treat someone of my age.” Nico’s mother quit her job in order to look after him full-time. “I think it was worst for her because she was behind the wheel.” Shortly after
Photos: David Robinson, Private
NOTHING WAS AS IT SEEMED He was given splints, which is standard with small children. And then came the shock. “When the supports were removed two months later, my mother noticed that I wasn’t moving my legs.” They later discovered that the impact in the car had pulled the youngster’s vertebrae apart. Initially, the doctors hadn’t seen any fractures. Internal bleeding had damaged his spinal cord. It slowly became clear just how seriously injured the child really was. “The doctors were of the view that there was nothing you could do for the spinal cord. I was paralysed from Th8-9, ie from the eighth thoracic vertebra down.”
his diagnosis, he and his mother moved to Russia for a year. There was a special rehabilitation centre for children there. I was only three, so the family visited as often as possible, but the distance was worth it. The centre’s philosophy was not just to learn to cope with the disability, but to work with it, to thrive from it. The more barriers there were, the better. It was pretty extreme.” Nico got his first wheelchair when he was four, but he didn’t particularly stand out at his integrated kindergarten. His father became very interested in medicine and the latest forms of treatment for his paraplegic son. “Obviously he wanted to try everything to get me walking again,” Nico says, thinking back to those tough times in his childhood. “While other kids were hanging out with friends or pursuing their hobbies, I was having treatment, often for up to six hours a day.” It was at school that Nico first experienced something akin to marginalisation due to his disability. “We’d agreed two years in advance that I’d go to the same primary school as my brother. But not long before school was due to start, they informed us that enough able-bodied children had applied for places and they wouldn’t be able to take me. So then I felt that I was different.” He switched to an integrated school instead.
Nico’s weapons are his serve and his forehand
ACE IMPACT Nico discovered tennis when he was eight. He wanted to join in when he saw his father and brother playing the game. “I enjoyed it straight away, even though to start with I could only hit about every seventh ball,” he says with a laugh as he looks back. And then things started moving very quickly. “We made enquiries with a coach, I was given an induction and I started going to training camps
“Other kids were hanging out with friends. I was having treatment”
with other players.” He quickly understood the challenges of wheelchair tennis. “You’ve got to be really fast and be in the perfect position to strike the ball. Combining movement and hitting the ball is hard. There’s a lot of training involved,” he admits. In fact Nico is still training – twice a day – and he flies to tournaments all over the world. “My father and I organise all that between us. I’ve already been to South Africa this year and soon I head off to the States. I’ve got great sponsors supporting me.” Nico is currently number 3 in the junior world rankings and number 55 in the seniors. CLEAR-CUT AMBITIONS He recently finished school with good exam results and will use the year ahead to prepare for the 2016 Paralympics in Rio. “There are some American universities which grant scholarships for wheelchair tennis. That would be a dream come true, obviously,” says the Vienna native. The Wings for Life World Run was also a sporting highlight. “In 2015, I made 36 kilometres in Lower Austria, which made me the second-best wheelchair user.” There are still everyday barriers to overcome. “I noticed it when I wanted to celebrate leaving school. Some friends and I wanted to go into one particular place, but I wasn’t allowed in because of the fire regulations.” It’s at times like these that Nico feels the full brunt of his disability. “In contrast to many other people with the same condition, all my organs, such as the bowel and bladder, work fine. I lead a pretty normal life and I’m happy,” says Nico, of the consequences of an accident he can no longer remember. “But one day it would be pretty great to feel my toes, stand up and put one foot in front of the other.” ... LIFE | 27
Road Trip Across America 28 | WINGS FOR ...
Mission accomplished: after 54 days of cycling, the ocean beckons at Manhattan Beach in LA
Converting good ideas into good deeds brings friends, family and acquaintances together, produces heart-warming stories, and serves as a springboard to the achievement of great things. People all over Photos: Lukas Knoll, Bernhard Schaffer
the world regularly take part in impressive fundraising activities to raise money for Wings for Life. Here, we present two of them: Austrian university students Lukas Knoll and Bernhard Schaffer, who cycled across the United States for spinal cord research
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Starting point: Lukas and Berni pose in front of the New York skyline
he waters of the Pacific Ocean off America’s West Coast were warm and salty. Lukas and Berni dipped their heads beneath the surface once more as the sun gradually faded behind them. Having finally reached the ocean, the two of them, like madmen, had leapt off their bikes and left them lying in the sand. “We’d actually made it from New York to Los Angeles by bike. At that moment, there were so many emotions at once: we were proud, wistful and ecstatic beyond belief,” says Lukas as he relives this unique experience.
“Having sore muscles, or just being able to walk, was really humbling” The two 28-year-olds had done a whole lot of organising, planning and training beforehand. It was four years earlier when Lukas, from the Austrian town of St Georgen an der Gusen, had dreamt up the idea of travelling east to west across the USA under his own steam. The idea became more concrete when he brought fellow Business Studies student Berni into the loop. “To be honest, I didn’t take him all that seriously 30 | WINGS FOR ...
when he said he wanted to be part of my plans,” says Lukas. The main reason being that the two of them are totally different. “I always want to take things to the limit. It’s only a challenge for me when the going gets really tough,” Lukas adds. “Whereas I just liked the idea and hadn’t thought all that much about fitness and the sporty side of things,” admits Berni. While planning their project, the master’s degree students agreed they wanted to add social value. “We decided we wanted to cycle for Wings for Life,” says Linz native Berni. They both liked the idea that 100 per cent of every euro donated went to research. “Then we thought up a concept and ended up offering stages of our trip for sale. You could buy one kilometre for one euro.” Friends, family and acquaintances loved the charity aspect and quickly came up with the hard cash for all 5,499 kilometres. “So we were really conscious of what exactly we’d collected money for when we were on our trip,” says Berni. “Being healthy and having the freedom that comes with that, whether it’s having sore muscles or just being able to walk, was really humbling.” The two of them took 54 days to cycle across the States, from Manhattan Beach, Brooklyn, on the East Coast to Manhattan Beach, LA, on the West Coast. “We had burst tyres, didn’t always agree
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The sponsorship plan was simple: one euro bought you one kilometre
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The project in numbers: 7,038 euros in donations 5,499 kilometres 54 days of cycling 4 years of planning and training 30 burst tyres
on things and pushed things to the limit physically,” Berni recalls. It took them a while to get used to local conditions – especially over the first 2,000 kilometres – but after that, they would cycle as many as 212 kilometres at a time. Back home, people could keep abreast of events on their homepage. “We also told people in America our story, and about the charitable aspect of our trip. During the journey, the donations kept coming in. Some people even slipped us cash because they were so impressed.” Once back in Austria, the pair knuckled down to finish their master’s degrees in Vienna, while also giving presentations on their experiences. “And at the end of it all, we raised 7,038 euros for Wings for Life,” the sportsmen reveal proudly at the end of their presentation. The two already have vague plans for future projects. “But we’ll never forget that moment we had when we reached the ocean at the end of our trip.”
FUNDRAISING IS EASY Want to do good things by hosting a private party or running a marathon for example? Then start your own fundraising campaign at wingsforlife.com, motivate your friends and collect donations. There are no limits to how creative you can be, and 100 per cent of every euro donated goes straight into spinal cord research. We hope you have a lot of fun.
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Good Vintage Picking the right research project is as elaborate as grape gathering. And those in charge bank on wines with great potential. In 2015, there were 45 of them project will take us one step forward and have a realistic chance of clinical application for patients in the future?
THE HARVESTING PROCESS The first pruning falls to our internal board. They narrow down the choice from the 250 executive summary applications from scientists for financial support by deciding which projects tally with what our foundation focuses on and which don’t. The project proposals that negotiate the first hurdle successfully are then sent to independent experts for review. They assess them for feasibility and scientific quality using a grading system similar to ones used in schools. At this point our scientific advisory board – the elite wine-growers, so to speak – come into play. They also assess each individual project and write recommendations. And that’s hard graft when you consider that they get files full to bursting with research papers. Then finally there is the main harvest. The executive board makes the final selection from the fine grapes. One decisive criterion is which 34 | WINGS FOR ...
Marathon session. The managing board and scientific directors of Wings for Life discuss and decide which research projects will be funded
On our website you can find an infographic about all our funded projects: http:// win.gs/1H5nN3d
GOOD WINE NEEDN’T BE EXPENSIVE We are often asked how much money we give when funding a project. Well, that depends on a number of factors, such as how much money the principle investigator has applied for and what stage their project is at. The cheapest project from this year’s harvest is getting 30,000 euros from Wings for Life, while the most expensive is getting a million. THE 2015 VINTAGE We’re very happy with this year’s vintage – 45 is a lot for us. Especially when you consider that there are two clinical studies included in that number – one on acute care and another on treating chronic conditions. But what’s even more important than the number of projects is the fact that we have good people working in all areas and that each project has real potential. A chance for us to achieve our goal of finding a cure for spinal cord injuries – 2015 promises to be a fine vintage. And here we would like to say a big thank you to the diligent experts who support our work for free, so that the money donated can be invested as best as possible.
Photo: Mathias Lixl
he most important thing for a good wine is good grapes. And to get those grapes, wine-growers use their experience and work diligently year round. The same applies to our specialists as they choose which projects to fund because they are always on the lookout for the perfect ‘grape’, too.
45 WINES This year, we selected 14 new research projects. In addition to those, there are another 31 projects that we’re now funding for a second or third year. All in all, that’s 45 projects. The portfolio ranges from axon regeneration to rehabilitation projects, from basic research to clinical studies. Neuromodulatory approaches are new on the agenda. This involves electrical pulses being applied to the affected area or directly to the brain to achieve locomotion, ie movement, after a spinal cord injury.
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THANK YOU 100% OF YOUR DONATION GOES TO SPINAL CORD RESEARCH
DONATION ACCOUNTS INTERNATIONAL Bankhaus Carl Spängler & Co, Salzburg, IBAN: AT27 1953 0001 0001 1911 BIC: SPAEAT2S Beneficiary: Wings for Life – Spinal Cord Research Foundation, Fürstenallee 4, AT-5020 Salzburg UNITED KINGDOM HSBC, Account No: 83882101 Sort code: 40-05-30 IBAN: GB72 MIDL 4005 3083 8821 01 BIC: MIDLGB22 Beneficiary: Wings for Life Spinal Cord Research Foundation, 155-171 Tooley Street, London SE1 2JP, UK USA www.cafamerica.org Donation in favour: Wings for Life, Austria, Europe