EDITION Nº 11
www.wingsforlife.com
SPINAL CORD RESEARCH FOUNDATION
The Nogo Trap Researchers in the US are testing a new treatment
Pregnant With a Spinal Cord Injury Tina talks about her new life as a trio
Make Your Body Smile. immun IRON WITH VITAMIN C + IRON
*Iron contributes to normal formation of red blood cells and Vitamin C contributes to the normal function of the immune system. We indicate the importance of a varied and balanced diet and healthy lifestyle.
NEW
Foreword
Imprint Wings for Life International Spinal Cord Research Foundation Fürstenallee 4, 5020 Salzburg, Austria Phone: +43-662-6582-4244 Email: office@wingsforlife.com 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: Seven Dials Warehouse 42-56 Earlham Street London WC2H 9LA Great Britain UK Registered Charity No: 1138804 Wings for Life USA: Spinal Cord Research Foundation Inc. 1630 Stewart Street, Santa Monica, 90404, CA 501 c3 Charity Contributors: Markus Böttinger, Claire Browning, Vieri Failli Lara Goritschnig, Sebastian Kösterke, Verena May, Nora O‘Donnell, Brandon Peters, Beatrice Sandner Editors: Marco Gröbner, Christina Herbst, Stefanie Schwarz CEOs Red Bull Media House Publishing: Andreas Kornhofer und Stefan Ebner Head of Co-Publishing: Susanne Degn-Pfleger Art Director: Simone Fischer, Sophie Weidinger Photo Editor: Matti Wulfes Design: Andreea Gschwandtner Project management: Jennifer Silberschneider Lithography: Clemens Ragotzky Translation: Manfred Thurner Producer: Sabine Wessig Printer: Offset 5020 Druckerei & Verlag Ges.m.b.H., Bayernstraße 27, A-5072 Siezenheim Acknowledgement: We would like to express our gratitude to Red Bull Media House for producing this magazine free of charge and Offset 5020 for donating the paper.
Dear friends and supporters, We are proud to present the 11th issue of our LIFE Magazine. In this edition we provide insights into our work and highlight to what use your generous donations are put. One of these uses is a revolutionary clinical trial led by Prof. Stephen Strittmatter in the US (p. 24). He is testing a drug that could stimulate nerves to regrow. If the trial is successful, it would represent a significant break- through that might restore key bodily functions for people with spinal cord injury. Every spinal cord injury tells its own personal story. Some – like Tina’s – are truly extraordinary. She is one of only very few women with a high-level spinal cord injury to give birth to a child (p. 34). Another one of those stories is from Eric Howk, guitarist of rock band Portugal. The Man. He suffered a spinal cord injury when he fell more than three meters into an unmarked construction hole – and is now changing the game for disabled fans together with the band (p. 48). Thank you from the bottom of our hearts for your generous donations, for attending our events, and helping us make a difference.
We hope you enjoy exploring our magazine! Your Wings for Life team
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Content 18
Adapting to Life
How one day in the great outdoors completely changed Casey’s life.
23 Column
When dreams learn to walk.
32 Did You Know …
… that spinal cord injury patients can have sex?
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Research 34 New Life as Three
Tina, a quadriplegic, gave birth to a child.
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Everybody Deserves to Rock
Eric Howk from rock band Portugal. The Man about their big goal.
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The Nogo Trap
A revolutionary drug could help injured nerves to regrow.
42 Research News
Seven promising approaches in the search for a cure.
Photos: Maclay Heriot, Marv Watson, Michael Millay, Lisa Jungmann
People
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34 Fundraising
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unded Projects F How your donation contributes to research. alents in Science T A conversation with Jonas Frisén of the Karolinska Institute Stockholm.
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Snapshots
Exceptional initiatives for a worthy cause.
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Favourite Pieces
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Everyone’s a Winner
STANDARDS
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Preface Imprint
Introducing our new Wings for Life collection.
The Wings for Life World Run inspires around the globe.
40 Cover: Michael Millay
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Photo: DTM/Hoch Zwei
Fundraising
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A New Partner to Accelerate Our Mission Our foundation entered into an official charity partnership with the DTM, one of the most exciting touring car series, in 2022. Among other benefits, the cooperation allows us to generate greater awareness for spinal cord injury research. DTM Chairman Gerhard Berger and his star drivers, Thomas Preining being one of them, put the pedal to the medal all season and auctioned off parts of their original equipment in aid of Wings for Life.
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Fundraising
The Best Meeting of the Year The “Gipfeltreffen” is so much more than merely our annual charity dinner. It’s an occasion for dear friends to catch up and spend a pleasant evening together. This year, we gathered at Scalaria on Lake Wolfgang. Our guests competed fiercely for the auction items, humbling us with their amazing support yet again. By the end, the event had raised around 535,000 Euros for spinal cord research.
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Photo: Andreas Schaad, Daniel Kopatsch
Photo: Jörg Mitter/Limex Images
Fundraising
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Fun, Games, and a Sensational Donation Our friends at the travel agency The Travel Birds staged a fantastic event: the legendary “Birdies & Friends Soccer Cup” in aid of Wings for Life. 15 teams competed against each other in glorious weather, and a magnificent performance saw the “Volcano Bulls” claim victory on the day. The Birdies not only succeeded in attracting topclass teams to Fuschl am See, but also showed maximum commitment on the football pitch themselves. The result is an extraordinary donation of 110,000 Euros.
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Fundraising
Photo: Piper Ferguson
United for a Cure at Cord Club LA The Cord Club LA marked our first fundraising gala in the USA. It was an exceptional evening, during which not only researchers, supporters, and affected patients came together, but people such as Wings for Life Ambassador Dianne Vitkus were honoured for their services. Indie rock band Portugal. The Man provided the musical highlight of the night – and in the end, live auctions and generous donors raised more than 394,000 US dollars for research.
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Photo: Tom Doms
Fundraising
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When two worlds collide 2022 saw the launch of The Driving Force event series. The purpose of these events is to bring together the world of F1 and collide it with the work of Wings for Life; to drive change, inspire others and have a seriously great time too. Wings for Life UK and Red Bull Netherlands hosted the The Driving Force – Zandvoort Edition with a star-studded guestlist, including Christian Horner, Dr Helmut Marko, Franz Tost, David Coulthard, Pierre Gasly and Yuki Tsunoda as well our CEO, Anita Gerhardter. The event raised an incredible 225,000 Euros for spinal cord research.
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Fundraising
Strong Supporters We are proud to have such valued supporters at our side. We asked some of them why their partnership with Wings for Life means so much to them.
“Hope was crucial when I sustained a high-level spinal cord injury and was paralysed. Wings for Life funded scientific research and clinical trials offer such hope for a cure and the outcome is truly life changing for people like me. Absolutely I owe my recovery to it, and that’s why I’m a proud supporter.”
Dustine West Artist & Wings for Life supporter
“Being introduced to Wings for Life has opened my eyes to the dedicated research work they do and the inspiring teams raising both valuable funds and awareness of spinal cord injuries. It doesn’t take much convincing to get on board and be a part of this incredible charity.”
Darin Jorgensen T-Mobile for Business (Silver Partner)
Steven Dowd Wings for Life Ambassador and supporter
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“We’re proud to be involved with Wings for Life because the research that goes into restoring people’s abilities, they once had, is incredible. The chances of being able to give that back and provide hope to having the life they once had before, is remarkable.”
“I support Wings for Life because they gave me hope after my spinal cord injury. Thanks to Wings for Life, I have hope for a cure, which gives me so much happiness and tranquility. The future is bright.” Dianne Vitkus Wings for Life Ambassador
Photos: Private, Hexagon, Richie Hopson, Piper Ferguson, Katie Lozancich
“I support Wings for Life to make a difference. I know the direct impact it takes on a family and am committed to finding a cure. Not only do I have the privilege to work for Wings for Life, but I also contribute to the cause with a payroll deduction.”
Hexagon Wings for Life supporter (Bronze Partner)
Rose Rather Development Manager, Wings for Life USA
“Hexagon believes in using data and technology to overcome problems, so the Wings for Life mission of curing spinal cord injury by supporting cutting-edge research really resonates with us. Our employees have participated in every World Run since 2015.” WINGS FOR LIFE
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Adapting to Life Photo: James Bannister
Casey, 30, a lover of the outdoors and dedicated teacher, suffered a life-changing spinal cord injury following a mountain bike accident when out riding one day with her friends.
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Casey has been through a lot, yet she has never lost hope.
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Strong family ties: Casey with her mother and her dog at Downderry Beach in Cornwall.
I remember everything from the day of my accident. It felt like any normal day. My boyfriend and I had planned to go for a bike ride with our friends, like we would always do. We went to this one section where there was a drop, which I had already done twice on my downhill bike, and it was completely fine. I approached it slightly faster than before and hit a different part of the drop which left me feeling like my bike was being pulled out of my arms. Next thing I knew I went completely over my handlebars. My feet were attached to the pedals and for the first time they didn’t unclip from the pedals like they normally would. I had all my protection gear on. A full-face helmet, knee pads and a back protector, but when I landed, I landed on my head and instantly 20
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felt an electric shock from my head to my toes. Straight away I lost feeling in my legs. My partner, Jay, is a mountain bike coach and has seen a lot of crashes and kept telling me I would be okay, but in that moment, I just knew that my life was never going to be the same. I remember looking up at Jay who had tears in his eyes and was trying his best to calm me down. The pain was like nothing I had ever felt before. The pain was so unbearable, I kept thinking I was going to die if the paramedics didn’t get to me soon. When the paramedics turned up, I kept telling them that I was lying on a spike and that it was stabbing me in the back. Only now do I realise that it was my broken spine. The doctors told me I had fractured my T8 vertebra by 50% and that it had crushed my spinal cord so badly I had a complete injury. They said I wouldn’t be able
to feel or move anything below my waist and that there was very little chance of me ever walking again. Being told that I wouldn’t have use of my bowel and bladder, no sexual function, and that my life expectancy might be affected, was a lot for me to get my head around. Getting all that information in such a short amount of time was
IT CAN HAPPEN TO ANYONE The main causes for spinal cord injury are accidents in daily life: 50% road accidents 24% falls 17% other causes 6% sports 3% extreme sports
Photos: James Bannister
Casey, do you remember much from the day of your accident?
so difficult for me to process and understand when only just 12 hours ago I was out riding my bike with my friends. None of it felt real, I completely broke down when they told me this news. What happened after your accident?
After a 7-hour surgery, I was in hospital for 2 weeks before being moved to The Spinal Treatment Centre in Salisbury, where I stayed for 3 months. Due to Covid-19, I had to isolate for 2 weeks on my own in my hospital room. Even the nurses wouldn’t come in very much. This was the lowest I have ever felt. I had just been given all this bad news and then was locked in a room alone to lie on my back, staring at the ceiling, not being able to move. I did a lot of video calls with my family, but those were very dark days. I kept telling
my family I didn’t want to live like this, and I wasn’t sure how I was going to. I could never picture myself in a wheelchair. I went from being so active to now not being able to move. When I got home it was a real shock for everyone and I missed being around understanding people in the hospital. Our house was not adapted at all, so it was a lot for my family to deal with. I felt the hospital was more of a safe space, whereas when I got home, I was completely reliant on everyone. What helped you after your accident?
Sports and the outdoors have given me a purpose with my injury. In the early days I just thought, who am I now? Who am I without being able to do yoga or ride my bike? I felt like I had lost my identity for a while but now have got it back, just
in a different way. It has given me motivation and a reason to wake up in the morning. Do you have any personal goals?
I would love to have a family, because the doctors say that I should be able to have children and I really would like to at least try. If I can get my daily routine to be a bit quicker, I would have more time to get back to teaching children in schools which I would love to do. What is important to me is to make the outdoors more accessible for others. I teach adapted yoga which I really enjoy and now
“I felt like I had lost my identity but now I’ve got it back in a different way.” Casey Gemma
The 30-year old lives in Cornwall, England. WINGS FOR LIFE
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“I was always on the go, either with teaching, yoga, cycling or out on the water with my paddle board. My days were always jam-packed with activities and work. I was a super active person.” Casey Gemma
have an adapted bike meaning I can go riding with my friends again. I want to help people with disabilities get back to the outdoors as that has really helped me. Another goal of mine is to have a fully adapted house. What would a cure mean to you?
It would mean everything for me. I have no movement or sensation below my belly button and that affects me in a massive way. I can’t tell when I need to go to the toilet so have accidents and I get so embarrassed. Just to even have the function back in my legs, I can’t even put into words what that would mean to me. I wouldn’t even mind if I couldn’t go on long walks or go exactly back to what I was doing, but if I could just stand up it would make everything so much easier. To be at the same eye-level as my partner and family would mean everything.
One of Casey’s favourite things to do: Yoga.
Before the accident: Casey loved to swim in the sea, even in cold weather. 22
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Photos: Private
Casey‘s first few days in the hospital.
Personal
Column
When Dreams Learn to Walk by Steffi Schwarz
Photo: Andreas Schaad
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n after-work event organised by Wings for Life: a few carefully selected guests enjoy freshly mixed drinks, lovingly decorated canapés, and unobtrusive background music. The purpose of this get-together is to present our foundation, to explain why research is so important and how invaluable every donation is to us. The large room features scattered bar tables illuminated in red and green as gathering points for animated discussions among guests. When the music stops rather suddenly, the venue falls completely silent for a few seconds. I know what’s coming, yet I’m still not prepared for it. A new song kicks in, much louder than the previous background music. Everyone scans the room as the bass booms. Here they come – moving cautiously, yet with determination. With “they” I mean my colleague Wolfgang and Hannes Kinigadner, who both suffer from a high-level spinal cord injury. They can neither move nor feel their bodies from the shoulder down. Yet right now – in this moment – they are walking. They move through the crowd,
all of whom are watching in amazement, one step at a time. Some applaud appreciatively, others shake their heads in disbelief, and still others are so
Hannes Kinigadner demonstrates what it would be like if he could walk again.
moved by the scene that tears well up in their eyes. Personally, I can’t stop staring at them. Every single step they take seems like a miracle in itself. I have only ever seen the two men in heavy wheelchairs – always sitting down and looking up at others from below. Right now, they seem huge. Almost twometre-tall giants with a presence
that floods the room. Wolfgang and Hannes have been practising this entrance for a long time. They are walking with the support of state-of-the-art exoskeletons*, and physiotherapists who prop them up from behind. When they reach the centre of the room, the audience applauds enthusiastically, and the host asks them how they feel. “Today, we still require assistive devices. But we want to demonstrate what is possible, what it would be like if we could walk again.” I am deeply moved on a personal level. This is one of those Wings for Life moments when I truly realise that I am working for a worthy cause – finding a cure and lending hope. I am working towards the dream these two men have just introduced to the room.
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WHAT IS AN EXOSKELETON?
Exoskeletons are rehabilitation aids that take over (large) portions of muscle work for their respective wearers. Wings for Life, however, primarily supports projects that are intended to enable independent movement for those affected – in short: biological cures. WINGS FOR LIFE
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Science
The Nogo Trap
Photo: Michael Millay
Researchers in the US are testing a revolutionary drug. The hope is that it could help regrow nerves and restore bodily functions of people with spinal cord injury.
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Justin (left) has been paralysed from the neck down since an accident. He is now part of a clinical trial led by Prof. Dr Dr Jan Schwab (right).
Science
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ustin is reclining in a treatment room at the Wexner Medical Center at Ohio State University. The walls are whitewashed. The room is filled with medical equipment and the unmistakable smell of disinfectants lingers in the air. Justin’s eyes are closed. His skinny legs protrude from under the bedspread. A physiotherapist standing next to him is testing whet her a nd where Just i n experiences any sensation with a safety pin. While the physiotherapist takes notes, the young American shares his story with us: “I had an accident in 2017, in my back yard.” As so often, Justin was enjoying time on his trampoline when a spin went wrong. It didn’t really look serious,
but the young college student fell unfortunately and fractured his cervical spine. An injury to his spinal cord left him paralysed. He can’t walk, can barely feel his body, and has restricted hand movement capability. What troubles him most, however, is that the spinal cord injury determines every aspect and second of his life. “I miss being able to be ‘last minute’,” he says. “I have to plan so many things throughout my days. Before, if I needed to be somewhere, I could just wake up, roll out of bed, get a bite to eat and get there really easily.” Interceptor molecule promotes nerve growth
Justin has come to the Wexner Medical Centre to participate in
Prof. Dr Dr Jan Schwab is the Scientific Director of Wings for Life and the neurologist in charge of the spinal cord injury division at Ohio State University, Wexner Medical Center (USA).
Prof. Stephen Strittmatter is Director of the Department of Cellular Neuroscience, Neurodegeneration, and Repair at Yale University (USA).
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“We must succeed in reconnecting nerve fibres and thereby restoring a neural network.” Stephen Strittmatter
Photos: Michael Millay
The team of experts
Left picture: Safety pins, cotton swabs, and touch pens are used to determine whether the patient can feel anything. Right picture: Prof. Stephen Strittmatter (left) is the initiator of the clinical trial, Prof. Dr Dr Jan Schwab (right) is leading the trial in Ohio.
a clinical trial. The trial involves testing a drug that is designed to help people such as himself: patients who suffer from chronical spinal cord injury, i.e. have been paralysed for more than a year. The drug is supposed to ensure regrowth of affected nerve fibres, thus restoring important bodily functions to the patients. Yet is that even possible? “It is,” says study initiator Stephen Strittmatter. The Yale
professor has spent the last few decades working hard on solving the puzzle of how to encourage damaged nerves to resprout. “When someone suffers a nerve damage, it interrupts the fibres between the nerve cells but leaves a lot of them alive. We need to reconnect them, to re-establish the neural network”, he explains. This cannot be achieved by natural means. The damaged nerves actually seek to regrow,
but several proteins prevent them from doing so. “We discovered a receptor for three key proteins and developed an interceptor molecule called the ‘Nogo trap’,” explains Strittmatter. This Nogo trap shields the receptor of the nerve fibre from being detected by the proteins. The result: the nerve fibre can regrow and form new connections. Injection into the spinal fluid
This approach has already yielded WINGS FOR LIFE
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A spinal cord injury severs nerve fibres and interrupts connections.
The damaged nerves seek to regrow, but certain proteins prevent them from doing so.
A standard kit contains the drug or placebo and utensils, ensuring that each treatment is identical.
great success in experiments. When Strittmatter injected the Nogo trap into the spinal fluid of paraplegic rats, a third of the paralysed animals regained full movement. Following these successful preclinical results, the
A molecule named Nogo trap is injected into the spinal fluid. It shields the receptor of the nerve fibre from being recognised by the “harmful” proteins.
The nerve fibre can regrow and form new connections.
The “Nogo trap” is injected into the spinal fluid. 28
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Nogo trap has been undergoing a clinical trial involving people with spinal cord injury led by Strittmatter since 2019. The aim is to determine whether the drug is also safe and effective in humans. The Wexner Medical Center is one of six institutions partaking in the study. Professor Jan Schwab is in charge of conducting the study there. He has monitored Justin and other participants over the last few months and explains the procedure: “The patients receive several infusions. We inject the medication directly into the spinal fluid through the lumbar spine. (i) This allows it to directly target the injury site and impact the entire spinal cord.” Then, numerous tests
Photos: Michael Millay
How does the Nogo trap work?
Illustration: waroom eine gmbh
Science
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WHAT IS SPINAL FLUID?
The spinal fluid (or cerebrospinal fluid) surrounds the spinal cord and protects it from shocks.
determine whether the patients are making progress in their ability to move and feel. That’s why Justin spends from nine in the morning to four in the afternoon at the clinic. Safety pins and cotton swabs are used to evaluate whether his sensory capacity has improved. This is followed by tests involving arm strength, everyday situations, and fine motor skills. Has his grip developed? Can he insert and turn a key in a lock? Can he pour himself
Motor skills tests determine whether a patient can turn a key in a lock.
a glass of water independently? The findings are meticulously recorded. They will later enable researchers to draw conclusions as to whether new nerve connections have really formed. High hopes
"It's a complicated study that is highly demanding on everyone involved", Strittmatter explains.
“If successful, however, it would open the door to an entirely new class of drugs.” Schwab has high hopes, too: “This study is really unique. If it succeeds as hoped, it will represent a major milestone.” The two neurologists are still uncertain whether their research will be rewarded with success. First results indicate that the drug is safe and well-tolerated. It is also WINGS FOR LIFE
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Science
“This study is really unique. If it succeeds as hoped, it will represent a major milestone.” Jan Schwab
important to bear in mind that the study is blinded. This means that some patients receive an infusion with the drug (Nogo trap), while others merely receive a placebo. This is the only way researchers can gather scientifically relevant data. Even Justin doesn’t know what kind of medication they injected into his back. Yet that’s not his main motivation. He understands that the f indings generated for spinal cord research are invaluable. “I’m taking part in the study because I want to help,” he explains. “Besides, it fills me with hope.” The hope that research will progress and one day result in a cure. What would he do first when the time has come? “If I could ever walk again, I would probably go dancing somewhere. Dance with my girlfriend. That’s probably the first thing I would do.”
How we support
Participation in the study gives Justin hope. 30
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Photo: Michael Millay
Wings for Life started funding Strittmatter’s research project in its early stages and has subsequently successfully accompanied it into the clinical testing phase. The foundation has provided the study with seven million US dollars in funding – its highest funding amount to date.
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Spinal Cord Injur y
Did you know that …
A
While many things change for people with spinal cord injuries, having a fulfilling sex life is still possible.
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spinal cord injury has farreaching consequences. The body no longer functions as it used to, which inevitably changes sex life. Women suffering from spinal cord injuries may no longer experience any or only partial bodily sensations from their level of injury down, but sexual intercourse – albeit in a different manner – is possible nevertheless. The same applies to pregnancy. Men affected face different challenges. They, too, no longer feel their body in the same way. Depending on the level and severity of their injury, both erectile and ejaculatory abilities are limited. This means that men suffering from spinal cord
injuries are usually no longer able to engage in spontaneous sexual intercourse. They are dependent on a wide range of therapeutic aids and medication (such as Viagra). Moreover, sperm viability decreases several months after the injury, resulting in limited fertility. These inhibiting circumstances can cause massive psychological stress. Given these new experiences – including a different body image and sexuality – those affected require people they can trust, who are prepared to approach this taboo topic seriously and without bias. While many things change for people with spinal cord injuries, having a fulfilling sex life is still possible.
Photo: Getty Images/iStock
… spinal cord injury patients can have sex?
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A New Life as Three
Photo: Lisa Jungmann
How does someone suffering from a spinal cord injury experience pregnancy? Tina knows. She is one of only very few women who gives birth to a child despite a high-level spinal cord injury rendering her quadriplegic.
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Almost there: Tina and Richard looking forward to the birth of their first child.
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Unexpected fate
Back then, she had just returned to snow-covered Tyrol from a trip around the world that took her to, among other destinations, India and Nepal. After spending some time at home, she decided to go snowboarding with her father and brother. Fate, however, decided to ruin a perfect family day after a few runs. The edge of her board dug into the snow, resulting in
an unfortunate fall that caused a cervical vertebra to fracture as her neck hit the slope. “I was fully aware of the fall itself and how I suddenly lost all feeling in my body. I was helpless and absolutely terrified,” Tina recalls with the pain of that day clearly etched into her face. She went on to spend many weeks in hospitals and rehab centres. The shattering diagnosis: a complete spinal cord injury at the level of the 6th cervical vertebra. This means she lost most bodily functions below the injury level. Her psyche suffered greatly after the injury: “I almost lost myself after the accident. I simply didn’t know who I was anymore.” The most beautiful gift
Much has happened since then. Tina has learned to come to terms with her new life. She has carved out a successful career as an artist despite not being able to move her fingers. Tina creates playful, friendly motifs and sells her selfdesigned products in her own shop.
“It’s a strange feeling that’s hard to describe. Due to my injury, I feel very little from the chest down. Yet I can definitely feel movement in my womb.” Tina Hötzendorfer
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A year ago, she met her partner Richard online. They fell in love and moved in together shortly thereafter. She became pregnant unexpectedly a short time later. “To be honest, I had pretty much given up on the subject of having children after my accident. That’s why I’m so excited, but I’m facing a huge challenge,” the mum-to-be acknowledges. When being asked what she is most afraid of, you can sense her exhaustion – and some tension. “It’s so difficult to gauge the physical capacity I will have when our child arrives. I’d love to take care of everything myself,” Tina says.
Photo: Lisa Jungmann
W
e meet in her bright f lat in St. Johann in Tyrol. Tina sits opposite me, her hands placed on her belly. She is eight months pregnant and about to give birth to her first child. “It’s a strange feeling that’s hard to describe. Due to my injury, I feel very little from the chest down. Yet I can definitely feel movement in my womb,” the 35-year-old says in a low voice. Her breathing is noticeably heavy. The pregnancy poses a strain on a body that suffered a spinal cord injury at the tender age of 21.
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SIX MONTHS LATER …
We meet again, in the same bright flat. Tina is sitting in exactly the same spot. Her belly is smaller and the expression on her face has changed. She seems changed, that much is clear. She has brought a new life into the world – and was forced to endure anxious hours in the process. When the worst comes to pass
Her son Elias was born six months ago in a planned caesarean section. Tina was in great pain for the first few days after the operation. Then her condition worsened suddenly. The water retained by the pregnancy accumulated in
her bladder. The sheer volume causes Tina to suffer from what is known as “autonomic dysreflexia”. The condition causes the blood pressure to rise to life-threatening levels. “It’s probably the worst that can happen to someone suffering from a high-level spinal cord injury. Nobody was prepared for this development. Pregnancies among people with my kind of injury are incredibly rare. Personally, I only know of one other woman in Austria who became a mum as a quadriplegic,” Tina tells us. Tina stabilised after a few hours in critical condition. Her son and she were forced to spend a few extra days in hospital as
Family bliss: the parents enjoy every free minute with little Elias.
a consequence. Richard never left her side. “The arrival of our Elias was a truly overwhelming experience. It almost tore my heart apart with love the first time I gazed into his eyes. When we were discharged from the hospital, there were suddenly three of us at home – a real family. There were many, many tears of joy,” says Tina, beaming with pride. The young mother’s emotional state is best described as a WINGS FOR LIFE
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“It almost tore my heart apart with love the first time I gazed into his eyes.” Tina Hötzendorfer
love to just do myself,” says Tina. Reconciling Tasks
Tina’s body has not yet recovered from childbirth. “You have to accept that not everything you set out to do will actually be possible. That’s not an easy thing to do,” the Tyrolean acknowledges. Yet life as a trio seems to work just fine. When their child is asleep, the two parents work for their shared business. When asked how they manage to reconcile all their duties, Tina and her fiancé exchange glances and laugh. It is indeed a herculean task to manage their lives. “It isn’t always easy, but
our child filled a gap we didn’t even know existed,” Richard explains. “There is so much love. Every day spent with our son is a priceless gift,” Tina adds while glancing at Elias. She seems to be in a reflective mood. She doesn’t dwell long on the question about her wishes for the future: “One day, I want to be able to walk across a meadow with my boy, to feel the grass between my toes. That would be wonderful. I can’t wait for this dream to come true.” Elias loves sitting on his mum’s lap. 38
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Photo: Lisa Jungmann
rollercoaster. Greatest happiness and joy are juxtaposed with painful sadness. Joy at having delivered a healthy child into the world, in a body that has already endured so much. Sadness about not being able to live up to her own expectations. She can’t just pick up her child when it cries. She can’t breastfeed, as her circulation won’t allow it. “I do feel terrible at times. When my son wakes up in the middle of the night, for example, I can’t simply go and fetch him. My fiancé does that for me, so we can comfort our son together in our bed. I require help with so many things that I would
A breath of fresh air: the family enjoys spending time outdoors together.
Pregnancy with a spinal cord injury An injury to the spinal cord nerves does not usually affect the female cycle. This means that women who suffer a spinal cord injury can experience a completely normal pregnancy. Vaginal childbirth is possible, even though the mother is often incapable of pushing actively due to lack of abdominal muscle control. Pregnant women suffering from a high-level spinal cord injury are typically forced to deliver by caesarean section.
Richard having fun with his son. WINGS FOR LIFE
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On Our Own Behalf
Favourite Pieces
Sebastian is 1.86m and wears size M
We are immensely proud of our new Wings for Life collection: casual T-shirts, hoodies, and polo shirts are now available via the online shop of our partner www.redbullshop.com. 100% of the proceeds go directly to Wings for Life and help find a cure for spinal cord injuries.
Photo: Wingmen Media
Shop for a good cause
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Sandra is 1.68m and wears size S
Nico is 1.83m and wears size M
Anita is 1.82m and wears size M
Marco is 1.76m and wears size M
Science
7 Projects Scientists around the globe are working feverishly to find a cure for spinal cord injury. Some approaches are difficult for laypeople to understand. This is an attempt to explain in simple terms some of the projects we are supporting.
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Photos: Tel Aviv University, University of Washington
With Promise
Electrified Skin
Electrical & Computer Engineering, University of Washington, Seattle, USA
Toxic Glutamate
Sagol School of Neuroscience, Tel Aviv University, Israel Glutamate is the most widely distributed messenger substance of the central nervous system. It is a decisive factor in nerve excitation, yet a high concentration can also cause nerve cells to die. Angela Ruban’s idea entails lowering the concentration of glutamate following a nerve injury, reducing the toxic effect and resulting damage. Lower glutamate levels could even lead to improved recovery and regeneration. This approach has already been proven effective in experiments following a stroke or traumatic brain injury. The administering of certain enzymes that break down glutamate resulted in improved motor function. This therapy could be clinically tested soon.
The team of Angela Ruban (left) from Tel Aviv University.
The idea entails lowering the concentration of glutamate following a nerve injury, reducing the toxic effect and resulting damage.
The team of scientist Chet Moritz has discovered that electrical stimulation of the spinal cord at neck level leads to significant and long-lasting improvements in hand function in patients suffering from chronic, high-level spinal cord injury. The stimulation is applied superficially to the skin on the back of the neck. Due to the use of adhesive electrodes, no surgical intervention is necessary. Surprisingly, the team also observed an improvement in muscle strength and sensory perception in the legs. Even bladder and bowel function were positively impacted.
Chet Moritz from the University of Washington.
The researchers now want to investigate in detail whether a combined, simultaneous stimulation via the skin on the neck and at the lumbar spine, coupled with intensive rehab training, increases this effect. In the case of high-level spinal cord injuries, the approach is intended to positively influence walking and autonomic functions.
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Science
Magnetically Lengthening Nerve Fibres
Università Di Pisa & National Research Council, Pisa, Italy
This technique is designed to regenerate nerve connections and be the cornerstone of therapy for patients affected by chronic spinal cord injury. Spinning and Strengthening Nerve Networks
Leopold Franzens University Innsbruck & Paracelsus Medical University Salzburg, Austria
Vittoria Raffa (second from left), Marco Mainardi (right) and team from Università Di Pisa and the National Research Council. 44
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Neuroscientists Frank Edenhofer and Sébastien Couillard-Després are currently developing a novel combination therapy. Their objective is to restore nerve connections through so-called induced neural stem cells. They
Photos: Private, Wild&Team Fotoagentur, Shana Thompson
How can nerve fibres be induced to regrow after a spinal cord injury? A team of scientists led by Vittoria Raffa and Marco Mainardi are studying this problem by breaking new ground. The researchers demonstrated that even small tensile forces stimulate length growth in nerve cells. These mechanical forces are generated by utilising magnetic fields. The required nanotechnology is highly sophisticated and was custom developed by the research group. This concept could conceivably be combined with other procedures and extended to stem cell therapy or the expansion of nerve networks in order to heal injured spinal cords.
Camila Marques de Freria from the University of California.
Tracking Down Genetic Codes
Neuroscience, University of California, San Diego, USA
also aim to counteract scar formation, as a scar impedes regeneration. To accomplish this, they employ special vesicles (extracellular vesicles), which are typically responsible for communication between cells. These vesicles are intended to unfold their effect at the injury site and in the bloodstream. This technique is designed to regenerate nerve connections and be the cornerstone of therapy for patients affected by chronic spinal cord injury.
Sébastien CouillardDesprés from Paracelsus Medical University Salzburg.
The most important human motor nerve pathway is the socalled corticospinal system, a connection from the cortex of the brain to the spinal cord. It transmits command signals from the brain to the spinal cord – which subsequently leads to activation of muscles and thus movement. However, it is also the pathway least capable of regeneration. This means an external stimulus is required. Neuroscientists led by Camila Marques de Freria are developing a combination therapy that combines stem cell grafts placed at the injury site and high-intensity rehabilitation training. In a first step, they aim to determine which genes are active in the human body during this treatment. After the genetic code has been deciphered, it can be compared with pharmacological agents featuring a similar genetic profile. The best active substances could then be applied to a new drug therapy for spinal cord injury patients.
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Science
Why Early, High-Intensity Movement Training? Faculty of Medicine and Health, University of Sydney, Australia
Martin Oudega from the Shirley Ryan AbilityLab Chicago.
Shrewd Transplantation
Early and intensive motor training is currently the most promising therapy for spinal cord injuries. Mainly because such training stimulates the plasticity of the spinal cord, i.e. the ability to form new connections. A study by Australian neuroscientists led by Lisa Harvey is exploring the effectiveness of early and intensive motor training on recovery and individual body functions. Recently injured patients are being assessed at several centres around the world in order to quickly put the knowledge gained into practice. This study has the potential to change the rehabilitation of spinal cord injury patients worldwide.
Shirley Ryan AbilityLab, Chicago, USA
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Lisa Harvey from the University of Sydney.
Early and intensive motor training is currently the most promising therapy for spinal cord injuries.
Photos: Chris Guillen, Northern Sydney Health Service
Martin Oudega and his research group specialised in so-called Schwann cells and their transplantation into the damaged spinal cord. The objective is to restore nerve tissue. One of the problems associated with cell transplantation is, however, that the new cells die quickly at the injury site. The scientists have now succeeded in introducing a special biomaterial that helps reduce the hostile conditions within the wound. The aim is to increase the survival rate of the newly transplanted Schwann cells. This novel, two-stage strategy could fundamentally transform cell transplantation and subsequently cure spinal cord injuries.
Science
Our Funded Research Projects 2022/23
1 Goal
15 Countries Australia Austria Belgium Canada France
35%
Find a cure for spinal cord injury
Germany Great Britain Israel Italy Netherlands
Portugal Spain Sweden Switzerland USA
Research areas
Basic research
Investigation of fundamental scientific questions
Imaging
6
1
12
Remyeli nation
43%
74
ongoing research projects
22%
Preclinical research
Examination of findings in living organism
Clinical research
Testing of therapies and medication in humans
1
Secondary damage
13
21
Recon struction
Regeneration
4 Bioinformatic
Total number of funded research projects 11
19
25
36
44
55
63
82
111
125
144
172
191
211
239 259
276
Biomarker
8
1
Rehabilitation
Illustration: Getty Images/iStock
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2006 2007 2008 2009 2010 2011
2012 2013 2014 2015 2016 2017 2018 2019 2020 2021
Please find detailed information on the research projects at www.wingsforlife.com/research
2022
Neuro protection
Plasticity
3
years – research projects get funded on average
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Everyone Deserves to Rock
Photo: Piper Ferguson
After guitarist and spinal cord injury survivor Eric Howk joined the rock group Portugal. The Man, his bandmates found a way to make the experience accessible for him. Now, he wants to do the same for their fans.
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After his accident, Eric Howk put all his energy into finding a way to play his favorite instrument again.
Spinal Cord Injur y
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tairs, curbs, cobblestones, grass. As a rock guitarist who loved touring, Eric Howk traversed these surfaces every day without giving them a second thought. Then in May 2007, he was sitting against a wall in a friend’s backyard when it collapsed. He fell more than three meters into an unmarked constr uct ion hole and was instantly paralyzed below his sternum from a T4 spinal cord injury. By his second day in the intensive care unit, Howk had a guitar in his hands, figuring out new ways to hold and position the instrument, even as he struggled to sit up without passing out. By day five, he was recording a track for a friend. Ever the studio perfectionist, he felt annoyed when the microphones would pick up the sound of his back brace knocking up against the guitar and the constant beeping of his patient monitor. “I felt like a swollen tick covered in hard plastic,” he recalls. But his objective was steadfast: “It was my therapy to get back into music.”
Eric has been part of Portugal. The Man since 2015. 50
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The show must go on
Howk had a clear goal, too. His band at the time, The Lashes, had a confirmed slot at a prominent music festival at the beginning of September, so he put all his energy into working with his doctors and physical therapists to find a way to sit with a guitar for at least 45 minutes. “It was unprecedented territory for everybody,” he says. “But it was not a conversation of whether it was going to happen. It was just how it was going to happen.” And it did. Howk played the festival and a few other gigs,
“It was my therapy to get back into music.” Eric Howk
but he yearned to be on the road again. “I began playing with any band that would have me that wanted to go on tour,” he says. “Figuring out how to play a show is one thing; figuring out how to tour was a much longer process. That’s still something I’m trying to figure out.”
Photos: Maclay Heriot
A new ensemble
For years, the rock band Portugal. The Man had had their eyes on Howk to join the group. Howk grew up in Wasilla, Alaska, with founding members John Baldwin Gourley and Zach Carothers, but Howk always had other commitments. “Growing up with Eric, he was always the best guitarist we knew,” says Gourley, PTM’s frontman. “He was always the dude you’d see in the hallway, just hanging out and playing guitar
every day.” But joining a major touring band as a wheelcha ir user presented a myriad of accessibility challenges for Howk. In the earlier years following his injury, he avoided flying on planes and drove himself to gigs up to a thousand miles away, but PTM played shows across the US and travelled abroad. When it came to venues, most didn’t have a working wheelchair lift – and many didn’t even have a ramp. And accessible tour buses? They practically don’t exist. “In our brain, we’re just thinking about logistics, trying to plan everything out with buses, stages, with backstage, with festivals,” says Carothers, PTM’s bassist. “We were over-thinking, just lost in our minds.” As they struggled to come up with a strategy, Gourley told the
Kyle O‘Quin, Eric Howk, Zach Carothers, John Baldwin Gourley (from left to right) together in one of their favourite places: the recording studio.
band they’d simply make it work. “John is a real good person when somet h i n g dema nds action,” Carothers adds. “He brought out the Alaskan and was like, ‘Let’s just do it.’ That’s how we do everything in life, so let’s just jump in and learn how to swim.” So, as a band, they swam. And they flew. And they carried Howk on and off the tour bus – or wherever he needed to be if it was inaccessible. Together, they made touring work, taking on each challenge day by day. “They make it accessible, just by carrying me on and off, you know?”, Howk says WINGS FOR LIFE
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Eric chatting to a fan at one of their meet-and-greet‘s backstage in Detroit.
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Eric Howk
2017, Portugal. The Man released its eighth studio album, Woodstock. The album produced two No. 1 hits on the alternative charts in the US, including the explosive megahit, “Feel It Still”. That song nabbed the group a Grammy in 2018, and they took their success on the road. The band toured across the US, Europe, and Australia with
Howk, who gathered data on the accessibility of every venue they visited – the good, the bad, the despicable. Making a difference
Over the years, PTM started to see some improvements, with local promoters taking note the more times Howk and the band passed
Photos: Maclay Heriot
with emotion in his voice. “There’s kind of this one-size-fits-all approach to accessibility for a lot of things. But having adaptability and flexibility gets things done better. Sometimes, it’s smarter. Sometimes, it’s harder. But with every situation that we’re in, we approach it as the situation comes. That’s very much the spirit of this band, and I don’t think I could do this with anybody else. I know I couldn’t.” Since Howk joined PTM in 2015, the band’s profile skyrocketed. In
“I don’t think I could do this with anybody else. I know I couldn’t.”
through town. Gourley explains, “At the very least, what’s going to happen is, [the promoters will say] ‘I got to build that ramp. I got to build that ramp. I got to build that ramp.’ And then eventually, the ramp just stays. They start to make those changes more permanent.” But questions lingered. Did venues maintain accessibility standards after the band left town? And what about accessibility for their fans in the audience? That last question prompted the band to take more action. “We were sitting on all this information, and it wasn’t really getting used,” says Howk. “It was getting used for
our benefit and for the backside of venues. But understanding that my experience as a concert player and the house’s experience as concert goers is often wildly different.” Portugal. The Man wanted disabled fans to get the opportunity to see them live, and for their most recent North American tour in 2022, they launched PTM Night Out, a charitable initiative created to make their concerts ADA accessible and centered on the concept that “Everyone Deserves a Night Out.” Select winners were given the VIP treatment, with transportation to and from the venue, as well as an on-site escort
The band in action at their concert in Los Angeles with Alt-J.
Lead guitarist Eric with some fans outside the concert venue.
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Portugal. The Man was the musical highlight of The Cord Club LA, a Wings for Life fundraising event for spinal cord research.
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world, pushing venues to do better. “We’re seeing actual concrete getting mixed in wheelbarrows, like real-time repairs in venues where they’re listening,” Howk says. “We’re doing audits and doing the work.” In September, PTM performed at the first-ever Cord Club event in Los Angeles, a Wings for Life fundraising event for spinal cord research. For Howk and the band, it’s an exciting opportunity to learn more about the comprehensive work being done across multiple studies. “Disability is as diverse as the people who are affected by it,” Howk says, “so you want to see a lot of different schools of thought, and it was heartening to see that approach. It was a beautiful night with a lot of optimism and a lot of hope.”
“Disability is as diverse as the people who are affected by it.” Eric Howk
Photo: Piper Ferguson
and an exclusive meet-and-greet with the band. “It’s a discovery and research project more than anything,” Howk says. “I don’t think that accessibility in ticketing for a lot of companies is working the best way. We know that it’s not one-size-fits-all, so it’s about having conversations. It’s easy to get hyper-focused on mobility access, but that’s just a tiny part of it.” Howk says solutions start to come from asking people what they need and not shoving them into a designated area. It’s about asking concert goers where they want to be, depending on their requirements. After a successful pilot program – and with a new album on the horizon – the band hopes to take PTM Night Out on tour around the
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Science
Talents in Science
Professor Frisén, what are you currently working on?
In your opinion, what are the most significant developments in the field of spinal cord research in recent years?
Our ongoing project, funded by Wings for Life, focuses on stem cells. We are attempting to influence endogenous stem cells in the spinal cord of mice – in such a way that new nerve cells are created. This should restore neuronal circuits and help restore lost bodily functions, such as walking.
I would argue the increasing understanding of axonal regeneration, as in the regrowth of nerve cells. I believe that knowing what inhibits and promotes this growth, as well as possible strategies for influencing these nerve cells, are the most important developments in the field of spinal cord research.
How did you first get involved in research?
Which research milestones are you particularly proud of?
I got excited about research very early during medical school. One day, while working in the clinic, I
I am most excited about the identification and characterisation of the role neural stem cells play
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in the adult spinal cord. I am very proud of this milestone. You are considered a visionary in your field. How do you expect spinal cord research to develop in the future?
I am optimistic that we will witness the development of more strategies to stimulate regeneration by means of cell replacement. This involves trying to replace dead cells in the spinal cord. I reckon there will be great leaps in this area. Is there anything you cannot live without?
My children, most definitely! They are now 12, 15 and 17 years old. For me, spending time with them is pure bliss. What dreams and goals do you pursue?
I dream of contributing to new therapies through my work, u lt i mately helpi ng pat ients suffering from spinal cord injuries.
Photo: Stefan Zimmerman/Karolinska Institutet
Jonas Frisén, Professor of Stem Cell Research, Karolinska Institute Stockholm, Sweden.
analysed tissue from an injured spinal cord under the microscope. I observed a group of cells that had reacted to the injury. Evidently, they were forming new cells in response to the injury. This was a eureka moment for me, leading to the identification of neural stem cells in the spinal cord. I gave up my clinical work and concentrated exclusively on fundamental research from that point on.
“I dream of contributing to new therapies through my work.”
Jonas Frisén is a professor of stem cell research at the Karolinska Institute in Stockholm, Sweden. His ongoing project, funded by Wings for Life, focuses on the formation of nerve cells from so-called neural stem cells in the spinal cord. The aim is to stimulate the spinal cord’s capacity for self-repair. Read more at: wingsforlife.com/research
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Wings for Life World Run
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Photo: Mahmut Cinci
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Everyone’s a Winner
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Wings for Life World Run
A The participants covered an average distance of approximately 12kms. Wheelchair users, professional athletes, and walkers – everyone’s a winner! How so? Because they run for those who no longer can. 100% of every registration fee supports spinal cord research. This year, we succeeded in collecting an unbelievable 4.7 million Euros. What a day! Thank you from the bottom of our hearts to everyone involved!
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Photo: Philip Platzer
Finest running weather in Austria, blazing heat in Cairo, hailstorms in Croatia – yet the whole world once again ran simultaneously during the Wings for Life World Run. Be it on their own preferred route via the app or at one of the many flagship runs, 161,892 people around the globe participated for the good cause.
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Wings for Life World Run
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Photo: Mark Roe
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Personal
Dear boss,
valued founder, mentor and friend, dear Didi!
Dietrich Mateschitz (1944-2022), founder of Red Bull and the Wings for Life Foundation.
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why you wanted to ensure that spinal cord injury wasn’t just a question of faith. Thank you for your visionary power, your generosity and your support. Thank you for all the things we habe been able to learn from you. Thank you that through your belief and investment we are able to give hope to everyone affected by spinal cord injury. The gap you’re leaving behind is enormous. We will continue to give our very best and keep on working to make you proud and fulfill your legacy to cure spinal cord injury.
In loving gratitude, Your Wings for Life team
Photo: Gérard Rancinan
A
t the time of his injury, you were the first person at Hannes Kinigadner’s bedside. Having seen how devastating an impact a spinal cord injury has on someone’s life, you founded– together with your friend Heinz Kinigadner – the Wings for Life Spinal Cord Research Foundation. Through your visionary power and your support, the research in this field has gained enormous momentum. In order to find a cure for spinal cord injury, you not only supported Wings for Life financially, but you also guided us with your wise advice and your sharp analytical mind. You always said: “We have to focus 100% on research!”. You wanted to see progress, therefore you often questioned the status quo and encouraged us to also look for new and alternative ways to reach our goal faster. Personal freedom was most important to you. Another reason
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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 Number: 80077577 Sort Code: 40-11-60 IBAN: GB11HBUK40116080077577 BIC: HBUKGB4194R Beneficiary: Wings for Life, Seven Dials Warehouse, 42-56 Earlham Street, London WC2H 9LA, UK USA Donate via Check to: Wings for Life USA - Spinal Cord Research Foundation Inc.,
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