Wings for Life Magazine – Edition No. 9

WINGS FOR

We have one mission: to make spinal cord injuries curable.

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EDITION Nº 9

www.wingsforlife.com

SPINAL CORD RESEARCH FOUNDATION

The

End

of a World Tour Vanessa recalls her fateful trampoline accident in New Zealand

PEOPLE When small improvements mean the world

RESEARCH Seven research projects in focus

FUNDRAISING Individually together at the Wings for Life World Run

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t i u r f r You e i g g e V &

SUPPORT YOUR IMMUNE SYSTEM. Vitamin C & D contribute to the normal functioning of the immune system.

We indicate the importance of a varied and balanced diet and healthy lifestyle. Recommended intake: a glass (250 mL) per day.

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 Boettinger, Anita Gerhardter, Sam Maddox, Vieri Failli, Wolfgang Illek, Verena May Editors: Marco Gröbner, Stefanie Schwarz, Christina Herbst Head of Commercial and Publishing Management: Stefan Ebner Head of Co-Publishing: Susanne Degn-Pfleger

Art Director: Dominik Uhl Photo Editor: Matti Wulfes Design: Andreea Parvu Lithography: Clemens Ragotzky, Nenad Isailovic Translation: Manfred Thurner Sub-Editor: Francisco Vilhena Coverphoto: Mona Lechner, Photo: Joerg Mitter

Producer: Friedrich Indich, Walter Sadaba, Sabine Wessig Editor & Executive Director: Andreas Kornhofer 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

Dear friends and supporters, We, too, are facing major challenges during the coronavirus pandemic.

Fundraising campaigns and events had to be cancelled or postponed, our researchers were not able to attend the Scientific Meeting, and people suffering from spinal cord injuries have been identified as a high-risk group. We explain why the latter have to be particularly vigilant with regard to infections on page 30. We also introduce you to little Emerson on page six. His story touched us deeply.

From page 32 we look back on the Wings for Life World Run, which was on the brink of cancellation after a whole year of painstaking preparation. We were only given the go-ahead for people to go out and run via the app a few days before the event. We had invested so much energy in planning the event, which is why we felt quite nervous when the big day finally arrived. Once again, you all came through and overwhelmed us all. More than 77,000 participants took to the streets to run alone – yet together – for spinal cord research. We would like to take this opportunity to thank you once again from the bottom of our hearts for showing such enthusiasm for a good cause, especially during such trying times and circumstances. Scientists around the globe also found ways to keep going. We introduce a few currently funded research projects on page 24, and take a closer look at a particularly promising study in Kentucky on page 52.

There will be many more challenges to overcome, but we will continue to pursue our goal with dedication and passion. We remain utterly convinced that, with your help, we can make spinal cord injuries curable.

We hope you enjoy reading this latest issue of our magazine. Stay healthy!

Your Wings for Life Team

5020 for donating the paper.

... LIFE | 3

CONTENT EDITION Nº 9

18 RESEARCH

6 What Touched Us Deeply

The story of little Emerson

18 A n Abrupt End

to a World Tour

Vanessa was planning to tour the world – until they reached New Zealand

30 Did You Know…

…that infections are highly perilous for spinal cord injury patients?

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46 When Small

Improvements Mean the World M ark Willits on what it means to rely on others for just about anything

24 Research

Projects in Focus

A closer look at seven current research projects

58 Like Riding a Rollercoaster

Kristina was among the world elite in track cycling – then she crashed badly

66 Column

What freedom really means

24

4 4 Talents in Science

Q&A with Belgian neuroscientist Aya Takeoka

Photos: Mona Lechner, Ian Witlen, Peter Rigaud/The Red Bulletin, private

PEOPLE

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46 8 FUNDRAISING

52 A Direct Current 8 Snapshots into the Brain

US researcher Lumy Sawaki is studying a new form of therapy

54 Your Donations at Work

Facts and figures concerning currently funded projects

56 Knowledge Check

Tricky questions to test your research knowledge

Fantastic fundraisers for spinal cord research

64 Incredibly Attractive

32 Individually Together

The Wings for Life World Run was a challenge – and a huge success

58

Our new fashion collection has arrived

STANDARDS

3 Foreword, Imprint

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SPINAL CORD INJURY

What

touched us deeply...

E

merson is a cheerful and lively little boy. His laughter, however, conceals a gruelling story: the story of a fighter. When Emerson was a merely three years old, a cyst formed on his spine and started pressing on his spinal cord. The result: an incomplete spinal cord injury at the level of the 6th/7th cervical vertebrae.

A catastrophic diagnosis for his parents Lee and Anna-Marina. “The day we learned that our child could no longer walk was certainly the worst day of our lives. It breaks your heart,” says Emerson’s mother AnnaMarina. After a period of anger, grief and fear, the family of five resolved to face the fate of their youngest member and created a certain degree of normality. Emerson duly learned how to play wheelchair tennis and basketball, started making friends, and even attending school.

Then, in 2020, his health suddenly deteriorated dramatically.

Emerson developed a fever, experienced chills, and

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In the blink of an eye, little Emerson s survival was at stake. His family feared for his life.

his heart rate skyrocketed. “Our worst nightmare had come true. Despite utmost caution, our child had contracted Covid-19.”

Emerson’s immune system is permanently compromised by his spinal cord injury (see page 30), meaning that the virus is lifethreatening for him. “We despaired and asked ourselves what else we might have to endure,” says Anna-Marina.

The family feared for the life of their little boy for days. Finally, his condition improved. Now that his life is out of danger, Emerson has been told he can recover at home in quarantine in South-East England, where his parents and siblings take care of him around the clock. “We are doing well again. We are eternally grateful that Emerson’s illness proved relatively mild.”

Photo: private

Emerson: a little man with tremendous fighting spirit.

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SNAPSHOT

South American Adventure Lukas Sommer took a year off to realise a life-long dream.

The Austrian cycled from Cartagena in Colombia to Ushuaia in Argentina, scaling the highest mountains on the way. He asked friends, acquaintances, and colleagues to donate money for every kilometre he covered, thus raising 6,515 Euros in total.

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... LIFE | 9

Photo: private

SNAPSHOT

Scaling Mount Everest in Slippers Ed Jackson devised a thoroughly unusual fundraiser to pass the time during lockdown. Over the course of just four days, he climbed 89,056 steps at home, thereby covering 8,848 metres in altitude. This is equivalent to the height of Mount Everest! What makes this achievement even more extraordinary is that Ed suffered an incomplete spinal cord injury after diving into a swimming pool in 2017. His very personal challenge raised 26,290 British Pounds.

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... LIFE | 11

Photo: Darren Wheeler

Photo: private

SNAPSHOT

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Cycling for progress Charles Brice was involved in a serious motorbike accident at 19 years of age and has been paralysed from the neck down ever since. Earlier this year, he launched his “Wheel to Walk� campaign. The Australian teamed up with others to cycle the 300 kilometres from the scene of the accident to the hospital on his hand bike. The gruelling challenge raised an incredible 100,000 Australian Dollars for spinal cord research.

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SNAPSHOT

Gipfeltreffen Deluxe This year, our annual Austrian charity dinner “Gipfeltreffen” was a fairly small affair at Winterstellgut.

Our guests enjoyed late-summer temperatures and a spectacular view of the surrounding mountains while happily outbidding each other at the auction. No less than 412,728 Euros were raised throughout the pleasant evening – a sum that Anita Gerhardter and Wolfgang Illek were visibly delighted with.

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... LIFE | 15

Photo: Andi Schaad

Photo: Paco-Media

SNAPSHOT

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From Lake Constance to the Sea This particular “Stand up for those who can’t” challenge was as tough as they come. Marc-Kevin, who hails from Germany, managed to travel along the Rhine all the way to the North Sea on his stand-up paddle board in 21 days. 1,111 kilometres later, he not only had sore muscles, but had also raised 3,233 Euros for the good cause. Marc-Kevin is already planning his next fundraising project.

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SPINAL CORD INJURY

An abrupt

End to a

World Tour Many harbour the dream to explore the world with nothing more than a backpack. Vanessa and her boyfriend were living that dream. At least until the day the young woman suffered a tragic fall in New Zealand‌

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... LIFE | 19

Photos: Mona Lechner, private

SPINAL CORD INJURY

P

acked backpacks, two around-the-world tickets, and the feeling that the world is at your fingertips…

Vanessa knows how it feels to have just that.

Following the completion of her studies in biomedical analytics and two years in a cancer research laboratory, she was eager to embrace life to the fullest one more time. She and her boyfriend planned an almost fourmonth trip around the globe. In October 2016, she boarded a plane to Thailand – full of anticipation and with a thirst for adventure.

She had even penned a bucket list of things she wanted to see and experience.

“I have always been very athletic and was eager to give everything a try. That is exactly what I did, too.” Vanessa attended full moon parties on the beach, observed penguins in their natural environment, and hiked along the ridges of the most impressive 20 | WINGS FOR ...

“Naturally, I had imagined this trip – my whole life – quite differently. I felt very sad.” coastlines. “This trip was one of the most wonderful experiences I have ever had. I ticked off so many items on my list and felt like the happiest person,” she recalls with a smile. She visited Kuala Lumpur, Singapore, and Australia before finally reaching New Zealand.

THE ACCIDENT While the first snow was falling back home in Austria and her family was getting ready for Christmas, the then 24-year-old was

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1. The start of an exciting adventure: exploring Australia in a camper van. 2. At the famous Full Moon Party in Thailand. 3. Vanessa in front of the Sydney Opera House. 4. Memories of wonderful times: Vanessa shows her sister photos of the trip.

enjoying the sunshine in a small village near Christchurch. “There was a huge trampoline park nearby, and we decided to check it out.” Vanessa and her boyfriend jumped and laughed together. “It did not take long before we started attempting forward somersaults and backflips. Everything was fine until I hit the ground at a very unfortunately angle.”

Vanessa stayed down. She was in awful pain. “My back hurt terribly and I could not move. One of the first things that popped into my mind was a wheelchair.”

Her boyfriend, the trampoline park staff, and other visitors rushed over and someone called the emergency services. Vanessa was hauled into a helicopter and flown to a nearby hospital where she underwent emergency surgery. Her fractured vertebrae were secured with titanium rods. When she finally came to, she immediately realised that she could no longer move her legs.

“A doctor explained to me, in English, that my spinal cord was injured by the impact and that I was completely paralysed from the 12th thoracic vertebra down. I was told I would never walk again.” It was an utterly surreal situation for Vanessa.

“Perhaps because it was all explained to me in a foreign language… but to me it all felt so unreal. It seemed like the situation was being explained to someone else…”

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... LIFE | 21

SPINAL CORD INJURY

THE TOUGHEST YEAR Vanessa was transferred to a rehab facility the very next day. Her boyfriend moved into a residential unit for relatives, meaning he was able to visit every day. “I was still in a great deal of pain, but the care I received was phenomenal. I was also very grateful that my injury did not occur at a higher level, ensuring that I could, at least, still move my hands and arms.” Vanessa seems composed when she recounts the circumstances she found herself in. She recalls the first time she sat in a wheelchair, the first attempts at navigating it, and the first shower in a seated position. “I was always busy, permanently distracted.”

AND WHEN THINGS QUIETENED DOWN? Vanessa’s light blue eyes fill with warm tears.

“Those moments were incredibly tough,” she admits openly. “Naturally, I had imagined this trip – my whole life – quite differently. I felt very sad.” After spending a month at the rehab facility, Vanessa was fit enough to be flown home. “It was actually a blessing to be away from home, to come to terms with my situation on a personal level before having to face my family.”

Her parents, her sister, and her two brothers found out about what had happened over the phone. All the more welcome was the happy reunion when Vanessa finally arrived back in Austria. Vanessa has a particularly close relationship with her sister Corina. “She was and is always there for me.

That means a great deal to me.” Vanessa tried out many different wheelchair sports during her time at the rehab facility. “I did not miss a beat in that respect,” she smiles. Archery, basketball, and even horseback riding… “In the end, I decided to learn how to play tennis to have another sport to share with my dad.”

While Vanessa immersed herself in her passion and was happy to find something she 22 | WINGS FOR ...

Vanessa regularly spends time on the tennis court and enjoys hanging out with her sister Corina.

“My sister was and is always there for me.” could be passionate about again, her parents moved out of their barrier-free apartment to make their daughter’s life easier. “It helped to return to a quasi-new environment rather than diving back into my old life.”

Nevertheless, she believes that, in retrospect, the first year was the toughest for her. “Experiencing everything anew, the great sadness one feels – it simply takes time…” The relationship with her boyfriend crumbled under the pressure of her new circumstances. “It was important for me to look to the future. He found that very difficult.

Ultimately, I no longer wanted to burden him with the situation,” she says more quietly.

INDEPENDENCE AND HOPE Vanessa started regaining some of her independence over time. She was soon able to go shopping alone and learned how to operate a specially adapted car with her hands.

The next milestone was a move into a house she shares with her sister. “We now live next door to each other, meaning she is around whenever I need help,” Vanessa smiles. Her life, she says, is now more structured, much less spontaneous than before her tragic accident. “Sometimes I think about sandy beaches and how difficult it is to enjoy them in a wheelchair. I miss the sensation of warm sand under my feet…”

She is, however, determined not to look back and ponder what might have been.

“I used to work in research myself, which means I am fully aware that progress requires time. Naturally, I would be thrilled if there was a cure or remedy for me and all the others who are affected,” she says. “But until that happens, I intend to be happy.” ... LIFE | 23

RESEARCH

At this very moment, numerous brilliant minds are researching a cure for spinal cord injuries. They hope to achieve their goal with a wide variety of approaches, methods, and ideas. We invite you to take a closer look at the following seven research projects.

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Photos: Wings for Life, private

Research projects in focus

How do muscles react to therapy?

UNIVERSITY HEALTH NETWORK, TORONTO REHABILITATION INSTITUTE, CANADA

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Researchers in Canada are looking into the arm and hand functions of affected patients. These can be improved by stimulating the corresponding muscles with electrical impulses.

The problem is that not all paralysed muscles respond to this electrical therapy equally well, and predictions as to how they will respond are vague. José Zariffa and his colleagues are hoping to

remedy this problem. They strive to develop a method to predict whether and how each individual muscle will respond to this kind of electrical therapy. This allows the development of effective therapy plans that are more closely tailored to the individual patient. 30 quadriplegics – individuals with high-level spinal cord injuries – are currently participating in the study.

How biomarkers help foresee the future

UNIVERSITY OF BRITISH COLUMBIA, VANCOUVER, CANADA Biomarkers make biological processes quantifiable.

They can provide important information for a diagnosis or the progression of a disease. Michael Skinnider and his team are hoping to develop such biomarkers for spinal cord injury patients. For this purpose, they analyse genes, proteins,

fats, and metabolic products of acutely injured patients.

This results in a vast amount of data. However, if suitable biomarkers are found, the researchers will be able to more accurately predict whether and to what extent the patients will regain functions.

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... LIFE | 25

RESEARCH

Why do nerve cells react differently?

BOSTON CHILDREN’S HOSPITAL, BOSTON AND HARVARD MEDICAL SCHOOL, USA Our body contains many different types of nerve cells.

These react very differently after a spinal cord injury.

Some regenerate more effectively, others less so.

Anne Jacobi is now applying a cutting-edge method to study why this is the case.

She analyses the genes of individual nerve cells and then compares them to each other. This is a monumental challenge from a technical point of view. The aim is to assist in the development of a therapy.

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Preventing cells from dying

UNIVERSITY OF MANITOBA, WINNIPEG, CANADA When the spinal cord is damaged, nerve cells die and tissue is compromised.

This damage is facilitated by lysosomes. Lysosomes are small cell organelles. One 26 | WINGS FOR ...

can imagine them as bubbles packed with damaging enzymes. Two researchers from Canada – Eftekhar Eftekharpour and Soheila Karimi – strive to eliminate

specific lysosomal enzymes with inhibitors. By doing so, they hope to reduce the number of cells that die and thus enable patients to retain more functions.

5 Deep brain stimulation INSTITUTE FOR BRAIN RESEARCH, UNIVERSITY OF ZURICH, SWITZERLAND Researcher Martin Schwab and his colleague Anna-Sophie Hofer hope to significantly improve the motor function of patients suffering from incomplete spinal cord injuries. To achieve this goal, they harness deep brain stimulation, a treatment that has already been successfully administered to Parkinson’s patients. It stimulates a region

in the mesencephalon that is essential to our locomotor system. Initial successes have already been achieved in the laboratory. The researchers believe that the brain is restructured by the stimulation.

This results in permanent functional improvements. The new treatment option is already undergoing parallel clinical testing. ... LIFE | 27

RESEARCH

Promising molecular cocktail DEPARTMENT OF NEUROSCIENCES, CASE WESTERN RESERVE UNIVERSITY SCHOOL OF MEDICINE, CLEVELAND, USA Almost everyone has a scar that reminds them of some kind of skin injury from the past. Spinal cord injuries are subject to similar healing processes, meaning they also cause scarring. In addition, a net is formed that envelops the synapses of the nerve cells like a veil. This process is both beneficial and detrimental.

Beneficial, because it prevents further damage.

Detrimental, because it inhibits nerve fibre regrowth.

A team led by Jerry Silver is working on removing this blockage triggered by socalled chondroitin sulphate proteoglycans. They employ a combination of two different approaches.

Firstly, an enzyme called chondroitinase penetrates the scar. Secondly, a peptide renders the inhibiting chondroitin sulphate proteoglycans ineffective.

The objective of this combination therapy is to restore functions to chronic patients.

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Research in the chemical library UNIVERSITY OF CALIFORNIA, DEPARTMENT OF NEUROSCIENCES, SAN DIEGO, USA Following an injury to the spinal cord, affected nerves usually do not grow back.

Erna van Niekerk and her colleagues are, however, working on that problem by transplanting neural stem cells into the spinal cord. They have observed that the nerve cells grow back more readily as a result. Now they intend to investigate what exactly,

or rather which substance, triggered this growth. To do so, they first identify all genes that are active in the nerve fibre. Then they compare them with a chemical library of more than 3,000 pharmacological agents.

The objective is to discover previously unidentified connections and new agents.

A MAGAZINE BEYOND THE ORDINARY theredbulletin.com LITTLE SHAO / RED BULL CONTENT POOL

SPINAL CORD INJURY

Wolfgang strives to prevent infection through special hygiene and protective measures.

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Did you know that‌

...infections are highly perilous for people with spinal cord injuries?

I

adhere very strictly to all protective measures imposed during the coronavirus pandemic. I spend a great deal of time at home and show the utmost of respect for the virus. As a paraplegic, I happen to be in the high-risk group; infections are particularly threatening for me.

Why is that so? Just like the legs, arms, or hands, the immune system is controlled by the central nervous system. In a sense, an injury to the spinal cord also “paralyses� the immune system.

If the injury occurs at a high level, as was the case with me, many connections with vegetative nerves are severed. This reduced defensive capacity makes me more susceptible to infections, especially pneumonia and urinary tract infections. Both can be life-threatening for me.

Photo: Stefanie Schwarz

As if that was not bad enough, people with high-level spinal cord injuries often also suffer from paralysed respiratory muscles. This not only greatly reduces breathing and coughing capacities, but also lung volume. Some patients are even permanently dependent on ventilators. An infection is particularly perilous for them, because they are no longer capable of coughing up the mucus that forms. Fortunately, spinal cord research is taking this problem very seriously. Researchers are currently trying to gain an even better understanding of the interaction between spinal cord injuries and the immune system, and to develop a therapy for impaired immune function.

Wolfgang Illek suffered a spinal cord injury during a bicycle accident.

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WINGS FOR LIFE WORLD RUN

Individually Together Phew! This Wings for Life World Run was a real challenge. We were forced to cancel all flagship runs due to the coronavirus pandemic, meaning that our favourite project was hanging in the balance. The app, which at least allowed some countries to participate remotely in the event, was our last hope – and it delivered! After weeks of lockdown, more than 77,000 people took to the streets to run for the good cause. We are still speechless! www.wingsforlifeworldrun.com

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Photo: Ian Witlen

FORT LAUDERDALE, USA

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WINGS FOR LIFE WORLD RUN

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Photo: Daniel Grund

MUNICH, GERMANY

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Photo: Christian Pondella

WINGS FOR LIFE WORLD RUN

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MAMMOTH LAKES, USA ... LIFE | 37

WINGS FOR LIFE WORLD RUN

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Photo: Sebastian Marko

SEEFELD IN TIROL, AUSTRIA

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WINGS FOR LIFE WORLD RUN

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Photo: Romina Amato

WETZIKON, SWITZERLAND

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WINGS FOR LIFE WORLD RUN

The Run in Numbers Since 2014 699,150

4,079

95

people from around the world have participated to date – significantly more than the entire population of Luxembourg.

participants have taken part in a wheelchair.

is the age of the oldest participant so far.

The South African woman covered 7.24 km.

195

22,287

110

nationalities have been listed in our register.

teams have been formed to date.

By contrast, the German football federation consists of 24,500 clubs throughout Germany.

7,378,113.6 km have been covered by participants.

That is almost ten times to the moon and back.

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tons of bananas have been consumed. That represents the combined weight of 18 fully-grown bull elephants.

Fancy adding to those impressive stats?

RUN FOR THOSE WHO CAN’T

MAY 9, 2021

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AT YOUR NEAREST FLAGSHIP RUN OR WITH THE APP 100% OF ALL MONEY RAISED GOES TO SPINAL CORD RESEARCH WINGSFORLIFEWORLDRUN.COM

RESEARCH

Talents in Science Aya Takeoka, PhD Neuroscientist at the Flemish Institut for Biotechnology and the Neuroelectronics Research Institut Flanders (NERF), Belgium

Can you explain your actual project in a few simple words?

After a severe spinal cord injury, communication between the brain and the spinal cord below lesion is disrupted. Under that circumstance, sensory information from muscles and tendons is the only remaining uninjured input to the spinal cord below lesion. We study what type of nerve cells in the spinal cord get directly or indirectly activated by sensory input, and how they contribute to restoring motor function.

How do you think spinal cord research is going to develop in the future?

I am already seeing projects with a huge amount of data analysis that have started to pop up. We will need to get used to handling big data routinely. This is great, as the more granular the scientific findings become, the better the chances to tailor personalized therapeutic interventions to impact the lives of patients.

What milestone are you most proud of?

I think I am most proud that I got to start my own laboratory. Also, I was lucky enough to meet so many great people along the way. I am very appreciative of that.

How do you wind down after a long day at work?

Wine (laughs). I picked up salsa dancing and enjoy talking to friends and family. I also love walks in the forests, to just breathe.

Do you live by a specific philosophy of life?

You get what you put in. That is one of the things I tell my students and postdocs in my new role of being a mentor. It is my job to teach them to become good scientists, how to write and communicate in science, but life is more than just skills.

Wings for Life contributes to the funding of Dr Takeoka’s project, researching the impact of sensory feedback on motor function. Learn more at: www.wingsforlife.com/research 44 | WINGS FOR ...

Photo: IMEC

W

hat fascinates you most about neuroscience?

Almost everything we do in our lives is based on learned motor skills. This happens most organically during development when we are young, but this plasticity also extends into adulthood.

Learning how to ride a bike and retaining that skill are good examples of motor learning and memory. For this to happen, defined sets of nerve cells, out of billions, must connect and fire in correct patterns while others may be suitably kept quiet. Motor recovery after injury is also a learning process to move again. How to reestablish good enough nerve cell wirings and a good enough ensemble of nerve cells getting active again – this is one of the fundamental neuroscience questions that we study as a lab. This is one of the fundamental neuroscience questions that we study as a lab.

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SPINAL CORD INJURY

When small improvements mean the world Mark Willits can’t breathe on his own, can’t move his arms or hands. He was injured in a farming accident and relies on others for just about everything.

He still lives as fully as possible. This is his story.

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Photos: private

Mark, with some assistance, enjoys a day on the slopes at California‘s Mammoth Mountain.

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SPINAL CORD INJURY

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M

ark Willits grew up on his family’s farm in the middle of Iowa. He realized early on that raising chickens and soybeans was never going to be his life’s plan, but farm life shaped Mark’s personality, and his destiny. “It was fun being a kid on a farm. I was always tinkering with things, figuring things out by taking things apart. I wanted to be an engineer.”

A farm accident when Mark had just turned 16 totally recalibrated his life. He was helping unload a truck when a load of plywood came unstrapped and fell on him, breaking his neck in the high cervical area.

Mark was transferred to Denver for rehab. “They taught me and my family so much about 48 | WINGS FOR ...

living with tetraplegia,” said Mark.

“But when I was first there, I wasn’t buying it. I was going to be the guy walking out of there. I vowed that I would defeat this thing.”

Once back home in Iowa after four months in rehab, Mark’s harsh reality could no longer be denied. He could only move his head He required a ventilator to breathe and depended on others for almost everything, including bathing, bowel and bladder management, and feeding. Mark could access a computer, using a mouthstick, and he could power his wheelchair, with a sip and puff device. But he had nowhere to go.

“Once the weather got cold, and all the special attention wore off, I had fewer visitors and was stuck inside. I got quite depressed. I became suicidal and I just didn’t want to get out of bed.”

“I refused to be victimized by my own pity, or anyone else’s.”

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1. Mark and Sheila affirm their love and vow togetherness in good times and bad. 2. Grandmom Claire joins Mark and Sheila with little Sydney.

3. Proud papa Mark with four-year-old Sydney.

One day, Mark said he just “bottomed out.” “I decided then and there that I would accept my reality, suck it up and live the life I have.” He knew from the way many people reacted to him that they saw only his misfortune.

He resisted any attempt to be labeled as a casualty. “I refused to be victimized by my own pity, or anyone else’s,” he said.

SHARED FUTURE Mark graduated on time with his high school class. He enrolled at Iowa State University with engineering in mind. After two years he took an internship writing

computer code for IBM. “It wasn’t for me. I hated being stuck with geeks all day long, and I got sick of the cold.” So Mark decided he’d transfer to Arizona State University.

His brother Aaron agreed to come along as his full-time caregiver.

Eventually Aaron moved back to Iowa and Mark was all on his own. He hired and managed his own round the clock caregiver crew. One of these caregivers formed a very special relationship with Mark. A woman named Sheila responded to Mark’s classified ad. She and Mark had a strictly professional relationship – for about a year. “At some point,”

said Mark, “we discovered there was something else to our time together.” They began dating.

Mark majored in political science at ASU, now with law school in mind. “I figured law was a career I could succeed at with my brain; it didn’t require my body.”

He was accepted to law school at the University of California, Los Angeles. Sheila eventually followed him to the West Coast, to complete a master’s program in marriage and family counseling at Pepperdine University.

In the summer of 2008, Mark and Sheila hosted a joint graduation party to celebrate his law degree ... LIFE | 49

SPINAL CORD INJURY

Mark and the adaptive ski team from Mammoth share the joys of winter sports.

and Sheila’s masters. It was a big event, with all their friends and out-of-town family attending.

“After the party got going Sheila, in front of everyone, got on one knee and asked me if I’d like to spend the rest of my life with her. It was a total surprise, I’m crying, everybody is crying – but I said yes!”

Said Sheila, “I’m not impulsive at all. It just felt like the right thing to do. Turns out it’s one of the best decisions I‘ve ever made.”

Mark passed the California bar and became a practicing attorney.

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But not for long. “I found it to be a demoralizing profession,” Mark said. “I never found any enjoyment in the adversarial nature of the law. There are wins, and victories, but I asked myself, ‘is it worth it.’”

Mark has not done much lawyering but he has stayed active as a citizen, helping other advocates to get the city of Los Angeles to fix broken sidewalks, helping a small local charity with peer-support outreach, or advocating for disability social justice.

“IT CAN JUST BE SO TIRING” In 2015 the couple decided to start a family, which required some high tech support in a fertility clinic.

But little Sydney is four now, the center of her parents’ universe.

Mark knows he can’t do a lot of normal dad things but figures his self-determined attitude will empower Sydney to be resilient and independent herself. “If I can’t help her with something, Sydney can figure it out on her own.”

Mark and his family moved to Scottsdale, Arizona two years

“I have to figure things out, be flexible. You have to deal with whatever it is and get on with it.”

ago. This year has been especially difficult for them, as the Covid-19 quarantine has limited Mark’s use of outside caregivers. Sheila had to handle all Mark’s care for three months, and still has to fill in 120 hours a week.

“The hard part about being married to a man on a ventilator is not that Mark can’t offer a hug.

I’ve adjusted to that and mourned that loss long ago. It can just be so tiring. I’ve worked all day, made dinner and already put our kid to bed. And then it’s Mark’s turn.”

Sheila brushes Mark’s teeth, transfers him using a sling from power chair to bed, gets him undressed, positions him, empties his colostomy and bladder bags, hooks up the night bags and the night ventilator.

Mark pays attention to spinal cord injury research and potential therapies. One or two vertebral levels of recovery – less than an inch – seems technically possible and could be quite significant.

“Let’s say I go from being a C3 to say a C5 or C6. I’d be able to breathe on my own, which would mean I would not need a ventilator, or the 24-hour care I have now in case the vent malfunctions.”

PATIENCE AND PERSEVERANCE “With even a cursory amount of arm and hand function I could be much more independent. I might be able to feed myself or get dressed.

What if I could drive somewhere by myself – that would be huge.”

More function might also mean more fun. “I went skiing a few years ago but it took a lot of planning and a whole team of people to help. My ventilator tube broke and we had to duct tape it up on the mountain.

With hands it might be possible to ski on my own.”

More function could also impact his relationship with Sheila. “Of course, I can’t give hugs, or pick up my child. It’s a strange dynamic for her to be my wife and my caregiver, so if I could do more of my own care, we’d have more of a normal relationship.”

Mark is glad he is not a farmer but recognizes the lessons it taught him: patience and perseverance.

“You can’t control the weather, the equipment, the soybean markets.

So, farmers do everything they can to manage their options. Same for me. I have to figure things out, be flexible. You have to deal with whatever it is and get on with it.” ... LIFE | 51

CLINICAL TRIAL

A direct current into the brain Try moving your thumb. It does not require much thought or effort, right?

The situation for people suffering from severe spinal cord injuries is, however, very different. A researcher from the US hopes to change that.

A

52 | WINGS FOR ...

Dr Lumy Sawaki’s study aims to improve the hand and arm functions of quadriplegics.

BRAIN STIMULATION AND TRAINING Her approach is highly innovative. So much so that, in fact, her ideas were initially met with considerable scepticism: “At first, it was extremely difficult to secure funding and convince my colleagues of the validity of the concept. That is why I am so grateful that Wings for Life believes in my approach and supports my research.”

Sawaki focuses on brain stimulation in combination with ergotherapy training (also known as occupational therapy). First, her patients are exposed to electrical impulses via the skullcap.

“We induce a low-voltage current via surface electrodes attached to the head. It requires no

Photo: Private; Graphic: Tom Mackinger

lmost half of all paralysed patients are quadriplegics, meaning that all extremities below the neck are either fully or partially paralysed. The loss of hand and arm functionality in particular severely restricts the affected in their daily lives. Squeezing toothpaste out of the tube in the morning, tying shoelaces, or opening a water bottle are almost impossible tasks for quadriplegics without assistance. Even the slightest recuperation would improve their quality of life significantly.

Dr Lumy Sawaki of the University of Kentucky is literally putting her hands to the task. The US researcher is working on a new form of therapy that could enable quadriplegics suffering from incomplete paralysis to use their hands and arms again in everyday life. “Spinal cord research has been particularly close to my heart ever since I began my medical training, mainly because so many young people suffer spinal cord injuries as a result of accidents. There is so much work left to do in this particular field,” she says.

Neuronal plasticity

The study in detail 1. Transcranial direct current stimulation The patient’s brain is stimulated by a direct current induced via surface electrodes attached to the head.

2. Ergotherapy training The second part of the treatment involves motor training. The exercises are specially designed for each patient.

surgical intervention and there are no side effects,” she explains. The method is known as transcranial direct current stimulation – or tDCS for short – and is also widely used in competitive sports.

The current aims to strengthen nerve cells in their ability to respond to signals. In other – more casual – words: to give them a healthy kick up their backsides. The technical term for the process is, in fact, neuromodulation.

In addition to the aforementioned stimulation, patients undergo ergotherapy training. What exactly does that entail, you ask? Dr Sawaki explains the procedure as follows: “I ask the patient to ‘find’ the thumb in his or her brain while I touch a thumb. When the patient has successfully located the thumb, I encourage him or her to imagine moving said thumb. I then move the thumb and ask the subject whether he or she can tell in which direction it was moved.”

Sawaki’s patients undergo twenty minutes of brain stimulation per therapy session, and then attempt to improve finger, hand, and arm functions for two hours – three times a week for two months. “It

Our brain and spinal cord change their structure ever so slightly on a daily basis. New experiences create new connections between nerve cells.

Existing paths are upgraded, while unused ones are razed. This ability to reconnect nerves is referred to as neural plasticity. It is the foundation for our capacity to learn new skills.

requires an enormous mental effort on the patients’ part,” says Sawaki.

NERVES RECONNECT It is an effort that appears to be worthwhile, however. The first patients who underwent Sawaki’s treatment approach showed real functional improvements. Why is that so? Sawaki believes that new nerve connections are formed through stimulation and training (see neuronal plasticity info box), even though the electrical stimulation occurs in the brain rather than the spinal cord. The underlying idea is to restructure retained nerve fibres, thus maximising their efficiency.

To explore the initial results further, she now plans to test the method on a larger sample. If this trial also proves successful, this would be a huge step towards an official therapy for hand and arm functions. A therapy many quadriplegics eagerly await.

The clinical trial, entitled IGNITE Trial, is cofinanced by Wings for Life with your donations. ... LIFE | 53

RESEARCH

Your donations at work

Funded research projects

1

59

GOAL

ONGOING

FIND A CURE FOR SPINAL CORD INJURY

RESEARCH PROJECTS

34% Basic Research

Investigation of fundamental scientific questions

34% Preclinical Research Examination of findings in living organisms

13

RESEARCH AREAS

Testing of therapies and medication in humans

3

8

9

Remyelination

3

Rehabilitation

18

2

5

Biomarker

Regeneration

Plasticity

3 Bioinformatic

Imaging

Secondary Damage

32% Clinical Research

COUNTRIES

SPAIN SWEDEN SWITZERLAND THE NETHERLANDS UNITED KINGDOM USA

AUSTRALIA AUSTRIA BELGIUM CANADA FINLAND GERMANY PORTUGAL

4 Reconstruction

4 Neuroprotection

239

TOTAL NUMBER OF FUNDED RESEARCH PROJECTS 11

11

19

25

34

42

54

62

84

110

124

142

170

191

211

2005

2006

2007

2008

2009

2010

2011

2012

2013

2014

2015

2016

2017

2018

2019

3 Years - research projects get funded on average 54 | WINGS FOR ...

Please find detailed information on the research projects at  www.wingsforlife.com/research

2020

FIRST AID SPINAL CORD INJURY FOR CERTIFIED FIRST RESPONDERS

We‘ve designed an App to help optimize the pre-hospital phase for patients with suspected spinal cord injury.

SCIENCE

Knowledge Check Have you ever wondered how much cerebral fluid the human body contains? Well, this is your chance to ponder such issues and make some educated guesses.

Our ultimate quiz features tricky questions and reveals the correct answers. Let’s get started – and no cheating!

What is the pyramidal tract (tractus pyramidalis)? a. A train connection between Cairo and Gizeh b. The largest nerve tract descending from the brain c. Sensitive ascending nerve fibres A neuron is…

The total combined length of all nerve pathways in our brain amounts to… a. Approx. 350km b. Approx. 175,000km c. Approx. 5,800,000km What are free radicals?

a. A nerve cell b. A component of the noradrenaline hormone c. The smallest components of an atom

a. Wild-flying atoms b. Rioting activists c. Aggressive reactive molecules

How much cerebral fluid (liquor) does the human body contain? a. None at all b. 130 to 150 millilitres c. 1 to 1.5 litres

a. A painting style b. A pressure sore c. A bursa infection

Trypanophobia describes a fear of…

a. Injections b. Too many attempts to cut bread c. Change 56 | WINGS FOR ...

What is a decubitus?

Dura mater is the name given to…

a. One of the three meninges b. A Spanish mountain range c. A hard mattress

How much does an average human brain weigh? a. 650 to 900 grams b. 1,300 to 1,600 grams c. 2,100 to 2,400 grams

>10

The term post-traumatic describes…

a. The delivery of a disturbing letter b. The time before an injury c. The time after an injury

4–10

A synapse is…

a. A Jewish place of worship b. A contact point between nerve cells c. A neurotransmitter in the central nervous system

What percentage of our daily energy supply is consumed by the brain? a. 5% b. 10% c. 20% One component of the central nervous system is… a. The sciatic nerve b. The spinal cord c. The solar plexus

<4

More than 10 correct answers My goodness, you must be a scientist or doctor. Your almost infinite knowledge about the brain, spinal cord, and nerve cells awes us. Hats off to you!

4 to 10 correct answers A solid result! You know your body fairly well, maybe even quite well. The next logical step is to expand your knowledge even further.

Less than 4 correct answers Whew, how can we break this to you gently? Let’s put it this way, there is a lot of room for improvement. But hey, it is never too late to learn something new, right?

Answers: Question 1: b; Question 2: a; Question 3: b; Question 4: a; Question 5: c; Question 6: c; Question 7: b; Question 8: a; Question 9: b; Question 10: c; Question 11: b; Question 12: c; Question 13: b ... LIFE | 57

aR

ke R ing id

r e t s a o rc

Kristina Vogel is an Olympic and World Champion in track cycling.

After a severe fall, the life, relationship, and dreams of the exceptional athlete suddenly changed. This is her story.

Photos: Frontalvision, Peter Rigaud/The Red Bulletin, private

Li

oll e

SPINAL CORD INJURY

58 | WINGS FOR ...

... LIFE | 59

SPINAL CORD INJURY

K

ristina Vogel lays in a hospital bed, staring at her bare legs. They felt heavy and motionless, as if they were no longer part of her body: “Not being able to feel them anymore was very strange. I wished I could just have them cut off, that was how bad it felt.” This was the first time in a while that the top athlete consciously engaged with her body. The first few weeks after the accident were all about struggling to survive. Kristina has always been ambitious and meticulous, even as a young girl. She was identified as an outstanding sporting talent at an early age. Every spare minute was spent on the cycling track. “Track cycling was my passion and my love. It is like riding a rollercoaster and playing chess at the same time.

It requires courage and perfect technique to race at 70kmh.”

At 17, Kristina joined the sports development programme as part of her police training, a decision that marked the beginning of her illustrious career as a professional cyclist. In the years that followed, she won two Olympic gold medals and was crowned World Champion eleven times. The press rightfully celebrated her as an exceptional athlete. “I had reached the pinnacle, and the pressure was enormous. That is why I always took training routines so seriously.” It therefore comes as no surprise that she was pushing herself to the maximum during training on the 26th of June 2018.

“The others were ready to call it a 60 | WINGS FOR ...

1

When she awoke from induced deep sleep, only one question was on her mind: “Am I paralysed?”

1. Setting a new record at the Six Days of Berlin. 2. The dream of every athlete: Gold at the Olympics. 3. Kristina attending the gala for the Thuringian Athlete of the Year 2017.

day, but I was desperate to do one more session,” the now 30-yearold recalls. She launched herself into another team sprint. While in the slipstream of a colleague, she prepared herself for her turn to take the lead. Adrenaline flooded her body.

This was the moment things went horribly wrong. In a split second, she collided with another rider at top speed and fell violently. “I remember trying to breathe calmly as I was lying on the floor, badly injured. I could not move and I immediately realised that something really bad had happened to me.” Kristina watched helplessly as first responders attended to her. When she saw someone carrying her shoes away, she became aware that she could no longer feel her legs.

emergency surgery. Her injuries were severe. The list included a shattered sternum and a spinal cord injury at the level of the 7th thoracic vertebra. When she awoke from induced deep sleep, only one question was on her mind: “Am I paralysed?” Her long-time partner Michael and the attending chief physician were forced to confirm her worst fears. “I still remember a small tear rolling down my cheek at that point.”

Kristina’s survival was at stake during the first few weeks, meaning it took quite a while until she was capable of actually facing her spinal cord injury. “There was a moment when Michael placed his hand on my thigh and stroked me.

3

A DIFFICULT PATH The athlete was airlifted by helicopter to a trauma hospital in Berlin where she underwent

2

... LIFE | 61

SPINAL CORD INJURY

4

5

4. & 5. Life partner Michael is Kristina’s “strong shoulder to lean on when needed”.

6. An emotional moment: Kristina is named Cyclist of the Year 2018.

7. Full of anticipation for the Olympic year 2016.

8. A strong woman: Kristina during the Red Bulletin Magazine cover shoot.

I was so angry. I simply could not understand why he was touching a part of my body I could not feel anymore.” This was the beginning of a difficult path for the top athlete.

She had to sit in a wheelchair for the first time and learn how to use it. She had to find a way to move despite what she calls her heavy and irritating legs. She taught herself how to transfer from her bed into the wheelchair, how to shower alone. “I have never been a patient person, and suddenly even the smallest tasks took forever.

I completely lost it at times,” she admits. Nevertheless, Kristina refused to give up and regained independence step by step.

Quite a few things needed to be adapted when she returned home. A lift needed to be installed, 62 | WINGS FOR ...

for example. “Michael was such a great help in so many ways.”

When you hear Kristina talk, it becomes clear that the former sprint cyclist is her rock. Does it feel like this burden has also been placed on him? “Yes,” she answers.

“It was particularly difficult in the beginning. Nothing was as it had been planned. I would have fully understood if he had decided to leave.” Michael stayed. He simply ignores the wheelchair now. “He always tells me that I am still the same person, just a bit shorter,” she smiles.

THINGS NOBODY SPEAKS ABOUT When Kristina attended her first sports gala in a wheelchair, she did so wearing a stunning white

dress and golden hair accessories.

Michael was, as always, by her side.

The journalists literally pounced on her, everyone wanted to know how she was feeling. “I made sure that I came across as strong and defiant. However, that does not change the fact that I had to access this and many other events through the back door, simply because the venues in question were not barrier-free,” she frowns.

She is not afraid of sharing more personal matters either: “There are some aspects nobody is willing to talk about. Now I know what it feels like to attend a TV show in diapers, to be constantly scared that one’s incontinence could somehow be revealed in public.”

These are highly sensitive issues that affect many spinal

6

7

cord injury patients. “I am still learning how to deal with it all.”

It is important to Kristina to address such issues openly, to draw attention to shortcomings.

This explains why she entered the political arena. “Discrimination is a major topic, and rightly so.

It does not stop at skin colour, sexual orientation, or disabilities – it rears its ugly head everywhere and is omnipresent… even when a healthy person has parked in a spot reserved for the handicapped.”

Some part of her has nevertheless made peace with her new situation. “I have achieved everything in sports, and I do not feel like I missed out on anything. I always wanted to retire undefeated, which I kind of did,”

she smiles as her dark humour breaks through. “Life is beautiful, and I still have plenty of joie de vivre in me. I know that some people suffer more than I do, and they cope too.”

Kristina has some exciting projects lined up for the future, including her own show, in which she introduces other athletes, and pundit jobs during sports broadcasts. She also dreams of starting a family of her own someday. “I am incredibly proud of what I have achieved over the past few years. It has been a long, difficult path from not being able to turn around in my bed without help to where I am now. It feels a bit like competing again, and I am still in the thick of it…”

8

“It feels a bit like competing again, and I am still in the thick of it…”

... LIFE | 63

ON OUR OWN BEHALF

Incredibly attractiveâ&#x20AC;¦ 64 | WINGS FOR ...

Photo: BAZZOKA Creative/Michael Kritzinger

Our new collection has it all: stylish hoodies, shirts, and sports accessories. The entire range can now be purchased via our partnerâ&#x20AC;&#x2122;s online shops. 100% of the proceeds go to Wings for Life and contribute to finding a cure for spinal cord injuries.

www.redbullshop.com www.redbullshopus.com

... LIFE | 65

PERSONAL

Column

BY ST E FA N I E S C H WA R Z

I

that she will be able to stand up soon, that she can have her old, carefree life back.

However, I cannot do that.

ask Michi: “How do you define freedom?” She is 28, strikingly pretty. Her green eyes alert, she has long eyelashes, and small laughter lines form around the corner of her mouth when she smiles. She brushes a strand of her long blonde hair from her face with a routine hand movement. “Freedom…,” she repeats as she gazes into space.

Michi requires help when she wants to grab a carton of milk from the top shelf of the fridge. She depends on the help of others if she wants to attend a concert or go out. Even the smallest step can represent an obstacle. “I am lucky to still be

66 | WINGS FOR ...

able to move my arms and hands, but much of my freedom is gone.”

She recalls how she used to be a passionate climber, played for a football club, and one day discovered parkour while running. “Today, even jogging would feel like the greatest freedom to me. To run until my heart races, until I am completely out of breath. To wriggle my toes a little – yes, that would be freedom.”

Our eyes meet and I sense the depth of her desire. I would love to tell her that she does not have to wait any longer, that there is a cure for her, and all the others affected. I would love to tell her

I try to imagine what it must be like to never take an unassisted step again, to lose that lightness, to no longer feel the ground beneath one’s feet… It is unimaginable.

The cool, fresh air hits my face as I step outside. I breathe in deeply. I am free. I glance up to the apartment one last time.

There is Michi, smiling down at me.

Stefanie was working as an editor when a wheelchair dancer shared her story with her during an interview. She applied to Wings for Life and has been responsible for our texts ever since.

Photo: iStock by Getty Images

The student suffered a severe accident two years ago, when she crashed her bike and was immediately incapacitated as a result. The spinal cord injury struck her like thunder. Such an injury had always been her greatest fear. We sit across the kitchen table from her mum. She has served coffee and cake. As I cross my legs, my foot brushes the heavy metal rim of Michi’s wheelchair. Her mobility aid is the most evident indication of her impairment.

I feel very sad by the time our conversation comes to an end. I bend down to give her a long hug.

When I leave, I quite consciously choose the stairs over the lift.

www.kiska.com Photo: R. Schedl

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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., 1630 Stewart Street, Santa Monica, 90404, CA