Wings for Life Magazine - Edition No. 10

WINGS FOR

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

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EDITION Nº 10

www.wingsforlife.com

SPINAL CORD RESEARCH FOUNDATION

This Is

Her Story…

One misstep into a different life

PEOPLE Philipp is paralysed overnight

RESEARCH Seven research projects in focus

FUNDRAISING The Wings for Life World Run makes history

Make Your Body Smile. immun PLUS WITH VITAMIN C + D & ZINC*

*Zinc, Vitamin C & D contribute to the normal function of the immune system.

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

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, Anita Gerhardter, Lara Goritschnig, Sebastian Kösterke, Verena May, Dianne Vitkus

Editors: Marco Gröbner, Christina Herbst Head of Commercial and Publishing Management: Stefan Ebner Head of Co-Publishing: Susanne Degn-Pfleger

Art Director: Dominik Uhl

Dear friends and supporters, Welcome to the 10th edition of our LIFE magazine. This milestone, which may seem minor to some, feels rather special for us as the editorial team. After all, we write every story ourselves and try to bring them to life in the magazine. This edition once again reflects a great deal of work and attention to detail. We hope you enjoy your read.

Starting on page 32, we look back at the Wings for Life World Run 2021, also known as the world’s greatest run ever. A whopping 184,236 participants came together via the app to run for those who can’t. They ran for people like Philipp Kuttin, who suffered a spinal cord injury when he fell from a balcony while sleepwalking (page 18), and Dustine West, who was forced to bury a professional dream when he was hit by a car on his way home (page 58).

Photo Editor: Matti Wulfes Design: Andreea Parvu Lithography: Clemens Ragotzky, Nenad Isailovic Translation: Manfred Thurner Sub-Editor: Francisco Vilhena Producer: Friedrich Indich, Walter Sadaba, Sabine Wessig

Like us, Philipp and Dustine place high hopes in research, particularly in gifted scientists such as Antje Kroner-Milsch of the Medical College Wisconsin. The German professor is currently researching “interceptor proteins in the blood” to prevent harmful inflammation in the spinal cord. You can learn more about this and other exciting research projects starting on page 24.

Editor & Executive Director: Andreas Kornhofer Coverphoto: Katie Lozancich

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

None of this would be possible without your loyal support. Thank you so much for your donations! Your help allows us to provide hope to so many affected people around the world.

Your Wings for Life Team

Media House for producing this magazine free of charge and Offset 5020 for donating the paper.

... LIFE | 3

PEOPLE 18 Paralysed

Overnight

Philipp sleepwalked into a completely different life

58 Stippling West

Dustine’s hands are paralysed, yet he paints

46 This Is My Story…

Dianne was enjoying a warm evening on a rooftop, but then she fell 4 | WINGS FOR ...

18

32 30 Did You Know…

…how profoundly a spinal cord injury impacts life?

6 Dermatome Map A map of the skin regions affected by a spinal cord injury

Photos: Roman Burri, Richie Hopson, Katie Lozancich, Taris L. Smith, Predrag Vuckovic, Henry Welisch

CONTENT EDITION Nº 10

8

46 24 RESEARCH 24 Research

Projects in Focus

Seven exciting approaches in the search for a cure

56 Talents in Science

A Q&A session with US-based neuroscientist Abel Torres-Espin

FUNDRAISING 64 Knowledge Check

Eleven tricky questions to test your knowledge

52 Scientific Meeting

A first virtual edition featuring a specially created platform

44 Trials Finder

A “dating platform” for patients and clinical studies

66 Funded Projects Facts and figures regarding our current research projects

8 Snapshots

Fantastic fundraising efforts for research

32 The Greatest Run Ever

The Wings for Life World Run makes history

STANDARDS 3 Foreword, Imprint

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SPINAL CORD INJURY

Dermatome Map

C2 C3

Each spinal cord nerve serves a specific muscle group (myotome) and a specific skin region (dermatome).

The dermatome map indicates which skin regions are affected after a spinal cord injury.

C4 C5 T1 T2 T3 T4 C6

T5

T1

T6 T7

C5

T8

C8

T9 T 10

SPINAL COLUMN AND SPINAL NERVES

T 11 C1 C2 C3 C4 C5 C6 C7 C8 T1 T2 T3 T4 T5 T6 T7 T8 T9 T 10 T 11

Humans generally possess a total of 31 spinal nerve pairs (exceptions possible). Each of these pairs is related to a specific spinal cord segment.

The spinal nerves emerge from the spinal column between two vertebrae and then divide into many branches.

C6

L1 C7

T 12

C8 L2 S 2–3 L3

front L4

T 12 L1 L2 L3

L5

L4 L5 S2 S3 S4 S5 Co

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S1

Green: cervical spinal nerves (C1-C8) Blue: thoracic spinal nerves (T1-T12) Purple: lumbar spinal nerves (L1-L5) Red: sacral spinal nerves (S1-S5) and coccygeal spinal nerve (Co)

S1 L5

C2 C3 C4 C5 C6 C7 C8

LOSS OF SENSATION Following an injury to the spinal cord, those affected suffer a variety of serious health implications. As a rule, this includes the loss of sensitivity. In other words, the person affected can feel no or limited sensation below the injury site. They may no longer feel other people’s touch, cannot tell if something is scalding hot or cold, and feel no pain. The latter can cause serious problems, for example when a minor skin irritation develops into a pressure sore.

C6

T9 T 10 T 11 T 12 L1 L2 L3 L4 L5 S1 S2

C8 C7

C6 S3

C8

C7

S4 S5 L1 back

S1 L5

S2

L2

L3

S2 S1

The dermatome map clearly indicates which regions are affected at which injury level. Here, too, the rule is: the higher the worse. If the sensitive fibres are injured at the level of the first thoracic vertebra, the patient can no longer feel anything from the chest down to the toes. Fortunately, this total loss of sensitivity does not manifest itself in all patients.

Many can still experience slight sensations, if they suffer from an incomplete injury.

Dermatome [Ancient Greek, dérma = skin and tomé = cut] A dermatome is an area of skin that is innervated by the sensitive nerve fibres of a spinal nerve pair.

Micro-sensors embedded in the skin register information such as pressure, pain, or temperature before passing it on via nerves to the spinal cord and from there to the brain.

L4 S1 L5 L4

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Illustration: Netter illustration used with permission of Elsevier Inc.

T1 T2 T3 T4 T5 T6 T7 T8

SNAPSHOT

Huge Success at our “Gipfeltreffen” “This is absolutely incredible, a dream come true.” Anita Gerhardter was visibly emotional when she and Heinz Kinigadner announced the record-shattering fundraising total of 522,550 Euros at our annual charity dinner, “Gipfeltreffen”.

The generous guests came together at Schloss Gabelhofen in Styria, placed their bids in the auction, and celebrated a truly unforgettable evening.

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... LIFE | 9

Photo: Andreas Schaad, Jörg Mitter

SNAPSHOT

Success stories on the Green Joe Delagrave sinks a putt at the Wings for Life Golf Classic in Louisville, Kentucky while Aaron Colton, Gunnar Sterne, and Aaron Baker cheer him on. Joe is one of three incredible honorees on the USA golf tour, which includes two additional stops in Carlsbad and Savannah. Live auctions and generous sponsors raised more than $900,000 among the events for spinal cord research.

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... LIFE | 11

Photo: Taris L. Smith

Photo: James Robinson & Richie Hopson

SNAPSHOT

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Intuition and Focus The annual “Clay Day,” a beautiful day of hunting clay pigeons with the historic Hedsor House near London as a backdrop, was once again a resounding success. The guests raised funds for Wings for Life while spending an exciting afternoon with celebrity hosts Christian Horner and David Coulthard, resulting in £171,000 for spinal cord research!

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SNAPSHOT

Rev it Up at the Red Bull Ring The hills around the Red Bull Ring in Spielberg were rocked by the Challenge & GT Days. First by the showdown of the participating historic sports cars, later in the evening by the amount of funds raised during the charity auction. The guests donated a whopping 84,833 Euros to Wings for Life.

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Photo: Michael Jurtin Photography

Photo: Marv Watson

SNAPSHOT

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Charitable Gaming David Hunt’s career as a snowboarder was abruptly interrupted by an accident in which he sustained a spinal cord injury. During his recovery, he discovered online gaming and streaming via Twitch. Today, he goes by the gamer name GrandPOOBear and is a successful streamer. He’s already held several streaming events to support the Foundation, having raised nearly $100,000. During his last streaming event entitled “Christmas in July,” David raised more than $21,000 for Wings for Life.

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SPINAL CORD INJURY

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Paralysed

OVERNIGHT

Photos: Henry Welisch, Romina Eggert, private

Imagine what it must feel like to go to bed healthy and wake up paralysed, trapped in your own body and unable to move. Philipp Kuttin experienced this nightmare. This is his story.

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SPINAL CORD INJURY

Philipp shares photos of his former life.

O

ne day in August, Philipp woke up in the middle of the night.

Everything around him was pitch black. At first, he had no clue where he was. He could feel a slight breeze dancing around the tip of his nose and damp grass brushing against his ear. When he felt the same sensation on his fingers, he realised that he was lying in a meadow. He could make out an angular silhouette directly above him, which turned out to be the balcony of his hotel room. His first thought was that he must of been dreaming. Philipp attempted to stand up, but his legs refused to move. There was a stabbing pain in his back. Everything around him

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was completely silent. Gradually he began to realise that something was horribly wrong. This was not a bad dream at all. He called out for help.

“Please do not let me suffer the same fate as Luki Müller, not like Luki,” was the mantra he kept on repeating to himself. Lukas Müller is one of Philipp’s former training partners, who suffered an incomplete spinal cord injury in a fall at the ski jump arena on the Kulm, Austria.

An army colleague finally heard Philipp’s cries for help. The duo was on a summer excursion in Upper Austria at the time. His colleague immediately called an ambulance, and the paramedics arrived soon thereafter. “I remember that everyone looked at me very strangely,” says

“That was when my world was shattered. I simply did not want to believe it.”

Philipp was a Nordic combined athlete for five years.

He ended his career in 2018.

Family time: Heinz, Gabriele, Jasmin, and Philipp Kuttin on holiday on the island of Elba in 2016.

Philipp as he recounts the fateful night that turned his life upside down. He remained conscious the entire trip to the hospital, his condition a curious blend of shock and composure.

At the time, his parents were at home in the South of Austria, a three-hour drive away. They immediately set off when they heard the news.

Philipp‘s sister, Jasmin, also rushed to his side.

One and a half days after undergoing surgery, Philipp’s condition deteriorated rapidly as he suffered a collapsed lung. This perilous condition made it almost impossible to breathe. The then 22-year-old was in mortal danger. His family feared for his life. “My parents took it really hard,” Philipp remembers. Luckily, he regained

consciousness after a few hours. He was out of the woods, but his body had suffered irreversible damage. A senior physician delivered his diagnosis later that day: complete spinal cord injury. “That was when my world was shattered.

I simply did not want to believe it,” says Philipp.

His first week in hospital was rough. His feet burned like fire, and he required strong pain medication. These nerve pains still occur even now. But there was more that Philipp suddenly had to contend with. His bladder and bowels no longer function, meaning he is dependent on help from others. “One simply does not feel it anymore.” After he was discharged from hospital, he was told to spend almost five months in rehabilitation facilities in Murnau and Bad Häring.

What followed were days packed with physiotherapy and regeneration exercises. Philipp learned about the skills he needs in order to master his new life. “The catheter is something you need to get used to from day one, otherwise you cannot go to the toilet. That was immensely difficult for me,” Philipp recalls. The fact that he was meeting many other recently injured patients initially created an aura of despair and hopelessness.

A FALL INTO A DIFFERENT LIFE How did it come to this? To this day, Philipp does not know what exactly happened that night in ... LIFE | 21

SPINAL CORD INJURY

August. There was no drinking involved, but he has a history of sleepwalking. “My mum found me sitting in the bathroom five years ago. I, myself have no recollection of how I got there,” Philipp muses. Fact is, he fell 8.5 metres from a second-floor balcony that night in 2020 – in his sleep. “My lowest flight to date,” he says dryly and laughs.

This comment is an excellent example of how the now 23-year-old deals with his fate. He has the mentality of an athlete. Looking back is pointless – you need to invest all your energy in moving forward. “I have come to terms with the memory of how my body used to function. My sole focus is on the here and now.” Philipp, the son of two-time ski jumping world champion and Olympic medallist Heinz Kuttin, once followed his father’s footsteps as a Nordic combined athlete. He still enjoys a very close relationship with his parents, not least because the family lives under the same roof. “My parents fell into a deep hole when they were confronted with the X-rays of my broken back,” says the young Austrian. Following the accident, Philipp’s father, Heinz, spent almost two weeks at the side of his son’s hospital bed. His parents’ house was made barrier-free while Philipp was in rehab. “My new bathroom features a sign that reads ‘pee lounge’.

Philipp is not one to look back, he prefers to focus on the future.

22 | WINGS FOR ...

My sister simply could not resist,” Philipp says with a grin. What has not changed throughout the harrowing experience is his close relationship with his family – and his love of online gaming. “I enjoy the gaming experience, preferably in a team. I have always been a team player. I met plenty of cool people in the gaming scene, some of whom even visited me while I was on rehab in Murnau.”

ALL FOR ONE Philipp’s accident triggered a wave of sympathy in his environment. The Klagenfurt ski jumping community wasted no time in launching a fundraising campaign to help their former teammate. Biathlon world champion Lisa Hauser even drummed up a team for the Wings for Life World Run. On the day, the “OESV Biathlon for Philipp Kuttin” team boasted an unbelievable 419 members and raised more than 11,000 Euros for spinal cord research. “It was so awesome to see so many people participate to support both me and my future.” Philipp himself joined the race with 40 teammates in the Weißensee region of Carinthia. “It was an incredibly hot day, but I managed to cover 13.5 kilometres in the end.”

Philipp’s next stop is Vienna, where he intends to start a sports equipment construction degree. “I am really looking forward to it. That is exactly my cup of tea,” he says with a smile.

Philipp seems strong and determined as he looks ahead. He has found a way to draw strength from his optimism, which seems to make it easier for him to accept his fate. He never lets on that he, still such a young person, has suffered so greatly. One does sense a touch of sadness when the question of what he misses comes up. “I miss some things, of course. Spontaneous trips and going out with friends are things I always enjoyed doing,” Philipp says as his gaze wistfully scans the sky. “And I miss flying, the ease of it.

If there was a cure, the first things I would do would be ski jumping and skydiving again.”

Support: Mum Gabriele is one of the most important people in Philipp’s life.

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SCIENCE

Projects in Focus As you read this, numerous bright minds are researching a cure for spinal cord injuries. They strive to achieve their objectives by exploring a wide range of ideas, methods, and approaches.

Here we shine the spotlight on seven research projects.

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Interceptors in the blood THE MEDICAL COLLEGE OF WISCONSIN, INC., NEUROSURGERY, USA

1

Tracking down the scar

Tissue damage caused by a spinal cord injury occurs in two phases. Following the initial trauma inflicted by the accident, subsequent damage is incurred through haemorrhage and inflammation. Blood degradation products have a toxic effect and can further exacerbate inflammation. German scientist Antje Kroner-Milsch is researching methods to reduce the resulting damage to a minimum.

An enrichment with interceptor proteins aims to help bind the toxic blood pigment known as “haem”. The research lab in Wisconsin focuses on patients who have suffered a high-level spinal cord injury that affects many bodily functions. The hope is to contain secondary damage with the interceptor proteins and prevent haemorrhage and inflammation from occurring after the accident.

2

Photos: Wimmer Photography, Erik Cronberg

KAROLINSKA INSTITUTE, STOCKHOLM, SWEDEN

The human body typically does not repair damaged tissue. Instead, it replaces it with permanent scar tissue. However, such scar tissue impedes nerve growth. Christian Göritz and his team have therefore embarked on a search for the driving forces behind this scar formation.

In doing so, they encountered connective tissue cells, so-called pericytes, which could play

a key role in the process. These cells are usually located on the vascular wall.

The researchers are investigating which molecules and immune cells are responsible for the migration of these cells. This insight would help to develop drugs capable of limiting scarring to a minimum in the future. The intention is to improve regeneration of nerve fibres and functional recovery. ... LIFE | 25

SCIENCE

3

Harnessing serotonin for improved movement UNIVERSITY OF LOUISVILLE, KENTUCKY SPINAL CORD INJURY RESEARCH CENTRE, USA

A spinal cord injury destroys nerve cell extensions, so-called axons. This results in the direct breakdown of nerve connections. Consequently, the chemical signalling molecules can no longer be spread as effectively throughout the spinal cord. One of these important transmitters is serotonin, widely known in brain research as the “happiness hormone”.

Electricity enables self-sustained standing

An elevated serotonin level in the spinal cord could restore a certain level of motor function via the preserved nerve cell extensions.

This highly interesting approach is currently being pursued by Jessica D’Amico and David Rouffet of the University of Louisville, USA. They are investigating whether patients with individually dosed serotonin tablets experience an increase in nerve excitability during movement training.

4

TORONTO REHABILITATION INSTITUTE, TORONTO, CANADA

There are several types of electrotherapies.

Paralysed muscles can be activated briefly by electrical stimulation. Other procedures focus the electrical stimulus on central nerve tissue (brain and spinal cord) or peripheral nerve tissue. Both applications involve attaching electrodes to the skin. Kei Masani and Dimitry Sayenko from Canada combine both methods

26 | WINGS FOR ...

to stimulate spinal cord and muscles simultaneously. This dual electrotherapy is designed to enable patients to stand freely without relying on assistive devices. Their goal is to develop a pair of leggings that incorporates the relevant technology. To achieve stable standing, however, they must first lay the foundations for such a combination therapy.

5 The mystery of immune defence

Photos: University of Cambridge, Pixabay, Sharon McCutcheon

UNIVERSITY OF CAMBRIDGE, CLINICAL NEUROSCIENCES, UNITED KINGDOM

The exact pathological processes that take place in our body after a traumatic spinal cord injury have not yet been deciphered. However, chronic inflammation likely plays a central role in cell death and scar formation. The inflammation is fuelled by resident immune cells, the microglia, and by patrolling phagocytes from the blood, the macrophages, alike. It is difficult to determine which role each cell type plays in the processes, not least because migrated phagocytes appear in the same guise as microglia.

Stefano Pluchino and his team from Cambridge hope to solve the mystery of the two cell populations. Genetic analyses and fluorescent markers, i.e. the fluorescent labelling of cells, assist them in doing so. The researchers plan to use this approach to unravel the exact sequence of the inflammatory reaction.

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SCIENCE

TEXAS A&M UNIVERSITY, BIOLOGY, USA

6

A group of scientists from Lausanne, headed

by Grégoire Courtine, recently succeeded in enabling chronically injured patients to retake their first steps. This project garnered considerable attention at the time. The researchers applied electrical spinal cord stimulation at the level of the lumbar spine and combined it with robot-assisted gait rehabilitation.

Now, they are trying to transfer the concept to patients with a high-level spinal cord injury (quadriplegics). The higher a spinal cord injury occurs, the more it impairs bodily functions.

These patients are particularly interested in regaining the ability to move arms and hands.

It is still necessary to conduct preliminary experiments to find out how to also restore arm and hand function through stimulation. The researchers are developing protocols that entail the correct anatomical starting points and optimal timing. In combination with rehabilitation, the treatment is intended to improve the grasping movement of hands.

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Stem cell transplantation promises a great deal of hope for a cure. Transplanted neural progenitor cells can generate different types of new nerve cells at the injury site. They are incorporated into the injured nervous system via neural connections. This makes the cells attractive candidates for restoring motor networks.

Resounding success has, however, failed to materialise to date. One reason for the lack of effective recovery could be that too little is known about the tasks and potential of the different nerve cell types. For example, the question arises as to which cell types are required to interact in order to restore leg movement. Scientist Ashley Tucker is currently studying this question in California. The results are expected to take research an important step forward in developing stem cell transplantation for humans.

Stimulation in space and time ÉCOLE POLYTECHNIQUE FÉDÉRALE DE LAUSANNE, GENEVA, SWITZERLAND

7 Photos: Texas A&M University, Roman Burri

Searching for the right kind of stem cell

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m o .c in t e ll u b d e r t e g

SPINAL CORD INJURY

A spinal cord injury is difficult to bear, which is why many affected also suffer from mental illness.

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Did you know…

…how profoundly a spinal cord injury impacts life?

B

e it a dive into shallow water, a bicycle fall, or a traffic accident – all such occurrences can result in a permanent spinal cord injury that leads to life in a wheelchair. However, no longer being able to walk is merely the tip of the iceberg. And that is bad enough. People who experience such trauma feel like the ground has been ripped out from under their feet. It shakes their very existence to the core. They are robbed of their autonomy and privacy.

The affected and their families ride an emotional rollercoaster shortly after the traumatic event. It includes denial, sadness, fear, frustration, and anger. During the acute phase, i.e. shortly after the accident, up to 30% of spinal cord injury patients exhibit depressive symptoms that require treatment, as well as plenty of human support.

However, serious illnesses that demand special treatment, such as anxiety disorders or depression, can arise in the longer term. Depression confines the majority of people suffering from spinal cord injuries to their beds. This has a broader impact: slower progress in rehabilitation or complications such as pressure ulcers and infections.

Photo: Stefan Voitl

Some people never emerge from this deep hole. They simply cannot accept their fate. A Danish study indicates that the suicide rate among people suffering from a spinal cord injury is five times higher than among healthy people. A tragic statistic that illustrates how profoundly such an injury impacts a person’s life.

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WINGS FOR LIFE WORLD RUN

A World Record Run What a day! What an atmosphere when the starting signal was given! Never before have so many people taken part in a running event simultaneously. 184,236 participants from 195 nations participated in the Wings for Life World Run to run for those who can’t. That’s a new world record! Some ran alone, others in small groups. Some walked, others rolled. Some started in the sweltering midday heat in Austria, Australia. Everyone was connected via an app that pushed them to new performance levels with motivational slogans. The result: 4.1 million Euros in donations for spinal cord research.

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Photo: Mykyta Zavilinskyi

others in the light of headlamps in nocturnal

KIEV, UKRAINE

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WINGS FOR LIFE WORLD RUN

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Photo: Ken Leanfore

SYDNEY, AUSTRALIA

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WINGS FOR LIFE WORLD RUN

Photo: Predrag Vuckovic

ROSE, MONTENEGRO

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WINGS FOR LIFE WORLD RUN

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Photo: Sebastian Marko

SALZBURG, AUSTRIA

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WINGS FOR LIFE WORLD RUN

Photo: Daniel Sommer

MUNICH, GERMANY

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WINGS FOR LIFE WORLD RUN

An Extra Dose of In-Ear Motivation We are particularly proud of our audio experience. It forms the heart of the Wings for Life World Run app. On race day, familiar voices such as Jane Lynch, Isaiah Mustafa and Nick Fellows cheer on the participants and provide updates on the progress of the event. Here is a small selection of quotes from the event in 2021:

“The wind is blowing through your hair with that killer running style – keep it up!”

“Keep on running.

The president may want to call you today. That’s no surprise: you’re the pride of the nation.”

“Can you feel it? Are your muscles starting to burn yet?

Anyway, the calories are just melting away. You are lit!”

Pssst, your Catcher Car here: the dust cloud on the horizon, is that you?

I’m now 2km behind you.

CARE FOR A LITTLE TASTE? Here are a few highlights from 2021 to listen to.

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Photo: iStock by Getty Images/Jobalou

“Hi, this is your catcher car, your moving finish line. In 15 minutes, I will start my pursuit.

I’m on my way to catch you.”

“Well, roadrunner? Are you up to operating temperature yet?

Keep going! Looking good as you run!”

2 2 0 2 , 8 Y A M T ’ N A C O H W E S O H T R O F RUN LD R O W E H T R E V O L TIME AL E M A S E H T T A R E TOGETH JOIN US NOW

SCIENCE

“Dating” Platform for Spinal Cord Injury Patients and Clinical Trials

People suffering from a spinal cord injury are typically interested in clinical trials in the hope of improving their health. Principal investigators of clinical trials, on the other hand, are desperately looking for suitable trial participants.

This new website aims to “match” these two groups.

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C

Photos: Shutterstock

linical trials are essential. They are necessary to assess the safety and efficacy of new forms of therapy. Moreover, successful trials in humans are required by law before a new drug or treatment can be approved.

Even though participation in a clinical trial does not necessarily promise or aim to improve the health of the participants, many spinal cord injury patients would nevertheless like to take part in one. Hope springs eternal, after all. But which clinical trial is most suitable? And what exactly happens in the individual studies? Patients and their families usually struggle to find answers to even such basic questions.

A validated database of all clinical trials worldwide does exist, but it remains a rather confusing labyrinth for non-specialists. In addition, most studies are described in technical jargon, meaning even one’s own family doctor might find it difficult to understand the material. A group of scientists recently came up with the idea of creating their own website exclusively for clinical trials in the field of spinal cord injury research, clearly structured and in lay language. Wings for Life not only funded this website, but also redesigned it from scratch and implemented it technically. The result is a platform that is precisely tailored to the needs of its various users. Patients can now quickly and easily find suitable trials, and then contact the organisers directly via the website. Furthermore, users are notified by e-mail as soon as a new study of interest is listed. Study organisers,

in turn, waste less time searching for suitable participants, while researchers appreciate the possibility of improving the evaluation of study data. It is a win-win situation for everyone involved and constitutes yet another building block for speeding up the introduction of new treatments to patients in the future.

As you can probably tell, we are very proud of our contribution to the new SCI Trials Finder.

We would like to extend our heartfelt gratitude to the company Intuio, who handled the relaunch.

Now online: www.scitrialsfinder.net

Mobile optimised: most internet users browse on their mobile phones.

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SPINAL CORD INJURY

I’m Dianne Vitkus and…

THIS IS MY STORY

Photos: Katie Lozancich, Malakhai Pearson, Private

About a year and a half ago my life took a complete 180.

Within seconds my life as I knew it was over.

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An inspiring young woman: Dianne is a Wings for Life Ambassador.

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SPINAL CORD INJURY

Before the accident: Dianne explores the nature of Arizona.

Dianne enjoys spending time with her friends, Carolyn and Kristin.

Strong family ties: Dianne with her parents at Boston harbour.

“I knew in that exact moment my life was never going to be the same.”

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I

had been working a 4-day stretch of 12-hour shifts as a surgical physician assistant in Syracuse, New York. This was my dream job. Inspired by my uncle, an oral surgeon, my job was to assist my attendings in the operating room and monitor their patient’s post-operative care. After work, I came home to my apartment and sunk into my couch. As I looked out the window and saw the beautiful sunset, I couldn’t help but want to get a better view and enjoy the warm summer heat.

I grabbed a blanket and climbed the ladder to the roof. I laid up there watching the sun escape beneath the horizon and then as it darkened, admiring the stars take over the sky. As I tried to descend the 12-foot ladder, I slipped and landed on the hard cement floor beneath me.

As I laid on my back, I remember feeling immediate pain in my right shoulder just naively thinking, “that’s gonna hurt in the morning.”

Strangely enough nothing else hurt and as I went to sit up, I quickly learned why ... I could not feel or move anything from my chest down. I knew in that exact moment my life was never going to be the same. I had 30 minutes to prepare myself for the chaos and uncertainty that was to come before someone found me and called 911. 30 minutes to reminisce my 28 years of life. 30 minutes to think about how relatively privileged my life had been up until this point. Did I take advantage of it? Would I have done anything differently? I had just settled into my job after years of schooling. Was it all for nothing? Will I ever operate again? To my surprise, even with all these racing thoughts, I remained relatively calm. I knew the control and freedom I once had over my life was gone, I would be wasting precious energy to put up a fight or panic. All I could do was take a deep breath and wait for everything to change.

The 28-year-old lives in Boston, Massachusetts.

So much has happened since then. I had fractured my right scapula and punctured a lung during the fall. Apart from the emergent surgery I had to fix my broken neck, I needed chest tubes, a feeding tube, respirator, and later a tracheotomy. I spent 4 weeks in the Intensive Care Unit in Syracuse. I never thought I wouldn’t make it out on the other side, that’s just my stubborn nature I suppose, but looking back I realize that every day I was fighting for my life.

Once I was stable, I was transferred to Spaulding Rehabilitation Center in Boston and I spent 2 months in intensive inpatient rehab.

... LIFE | 49

SPINAL CORD INJURY

Dianne’s friends provided powerful support after the accident.

Having been diagnosed with type one diabetes at 18 years old, I thought I was well-versed in adversity. But I quickly learned that adversity is something you overcome, struggle is something you endure. I’m going to struggle every single day, that’s not a choice I have. But I do have the choice to struggle with love and laughter or resentment and misery. When you struggle with love and laughter, days are a little less hard.

This mindset of optimism and perseverance grew through competition and sport. I grew up as a three-sport athlete and then went on to play collegiate lacrosse at the D1 level. After college I stayed active, joining a High Intensity Interval Training gym, running a marathon, biking and hiking regularly. I definitely have had many obstacles throughout these athletic endeavors, but I have a zest for life that drives me forward regardless of temporary setbacks.

Not to mention I have a whole community I know has my back. And that I think might be my biggest saving grace. I may not be able to walk but they will help me stand. As Chris Norton said, “happiness isn’t measured by steps. It’s measured by the relationships you form and the relationships you keep”. It was the drive to repay the kindness that these relationships have shown towards me that has propelled me through my recovery. Even complete strangers have not only supported me but, also my family, by sending cards, flowers and balloons, donating money, preparing meals, and the list goes on.

50 | WINGS FOR ...

“I will walk again one day.”

Hope for renewed feeling and movement below my injury level slowly faded from my immediate focus as the months passed by. I didn’t want to set my expectations too high just to be let down. But as I learned about Wings for Life and all the successful research and clinical trials they have funded, aimed at healing the injured spinal cord, my hope was restored. As I learned about their mission to find a cure, I knew I wanted to get involved. I will walk again one day, and that comeback will be that much more epic because of the love, laughter, and happiness I still achieve in this chair.

Dianne has been through a lot, yet she is radiant.

... LIFE | 51

SCIENCE

A digital platform with an “Austrian touch”.

52 | WINGS FOR ...

First virtual edition:

The Scientific Meeting 200 participants, 31 live talks and 53 poster presentations – the summary of the first virtual scientific meeting.

T

he Wings for Life scientific meeting is held every spring. Scientists from all over the world travel to Salzburg, Austria to attend the high-profile conference.

They present research projects, exchange ideas, and initiate new collaborations. In 2020, the pandemic necessitated the cancellation of the

meeting at short notice. However, under no circumstances did we want to sit out another year. Hence why we moved the conference online and designed a digital event platform in an “Austrian style”, with the Wings for Life headquarters as the main stage and a beer garden for networking purposes.

Photo:s Brandmood, Christina Herbst

The organisation committee is thrilled that everything went according to plan.

Big thank you to the Brandmood team.

The event specialists ensured that everything went smoothly on a technical level.

... LIFE | 53

SCIENCE

Three questions for our Scientific Director Prof. Jan Schwab, MD, PhD: How did you find the virtual scientific meeting experience?

It was a worthy Wings for Life symposium.

Researchers from all over the world tuned in to the platform. The feedback was overwhelmingly positive, even enthusiastic in some cases. Many discoveries and new insights prove that the effort was certainly justified.

2.

What exactly happened during the three days?

The scientific meeting is a so-called “investigator meeting”. Wings for Life funded researchers report on the current progress of their projects, “fresh from the bench”. This includes completely new, unexpected, 54 | WINGS FOR ...

and unpublished results. Particularily, the unexpected ones can often lead to new discoveries. The covered areas cover the full translational spectrum and range from fundamental science, preclinical research to early clinical testing. It is encouraging to see funded projects approach early to clinical testing.

3.

Why is the scientific meeting so important for its participants?

It offers a precious opportunity to present and discuss early discoveries even before they are published. It facilitates direct exchange and criticism early in the process and is an excellent place for networking and cooperation. All these aspects improve a scientific project and increase the relevance for patients who are hoping for treatments.

Photo: David Robinson

1.

Professor Schwab played a key part in establishing the foundation in 2004.

I.B.C.understands understandsaa simple simple business business principle I.B.C. principle in in the theconvenience conveniencestore store industry:C-store C-storeowners owners are are overlooked overlooked by industry: by most most suppliers supplierswhen whenthey they haveless lessthan than50 50stores. stores. We We understand understand how have how difficult difficultititisisto tocompete compete withthe thelarge largechains chains which which is is why why we with we offer offer the the buying buyingpower powerofofour our 6,000+ stores.

6,000+ stores.

YEARS IN BUSINESS: 28+ | MEMBERSHIP COUNT: 6,000+ YEARS IN BUSINESS: 28+ | MEMBERSHIP COUNT: 6,000+ APPROXIMATE RETAIL SALES: 22 BILLION+ (Source: 2019 NACS) APPROXIMATE RETAIL SALES: 22 BILLION+ (Source: 2019 NACS)

SERVICE AREAS: Alabama, Arizona, Arkansas, California, Colorado, Florida, Georgia, SERVICE AREAS: Alabama, Arizona, Arkansas, California, Colorado, Florida, Georgia, Illinois, Indiana, Kansas, Louisiana, Michigan, Mississippi, Missouri, New Mexico, Illinois, Indiana, Kansas, Louisiana, Michigan, Mississippi, Missouri, New Mexico, Nevada, North Carolina, Oklahoma, South Carolina, Tennessee, Texas, Wisconsin Nevada, North Carolina, Oklahoma, South Carolina, Tennessee, Texas, Wisconsin

Proud Supporter Supporter of Proud of Wings Wings for for Life Life

SCIENCE

Talents in Science Abel Torres-Espin, PhD Neuroscientist at University of California, San Francisco (UCSF), USA

How did you first become involved in research?

Everyone knows of those children, and some adults, who are compelled to peer behind every door and into every drawer. I am one of them. My curiosity determines how I engage with the world. Research is an outlet for that curiosity. It gives me the opportunity to be surprised and fascinated anew every day. Also, I find myself interested in smart people, of which there are plenty in research.

What might your typical working day entail?

I switched from the lab to data science research three years ago. I have been spending about 90 percent of my working day in front of the computer ever since. My days consist of data research, programming, writing, reading, and many meetings with colleagues. I teach from time to time, too. And one must not forget the e-mails either, of course.

56 | WINGS FOR ...

What are you particularly proud of?

I am of humble origins, the first academic in my family. It makes me proud that I was afforded the opportunity to study and contribute to research.

How do you unwind after a long day at work?

That depends. If I feel like being alone, I drink a beer, read, or indulge in creative programming. If I feel like company, I go climbing with friends or meet up for a drink.

Do you subscribe to a particular life philosophy?

Balance, love, and patience. I believe that extremism in life poisons our minds. That is why I try to approach things in a balanced way. If you think too much, nothing ever gets done. If you act too brashly, you are always busy without really thinking. I love what I do and the people who surround me. And I preach patience because I see life as a long journey that requires time.

Which dreams and goals do you pursue?

I want to facilitate the work of other researchers. That is my ultimate scientific goal. To achieve this, I develop methods that simplify the process of data collection and analysis. Data should become more accurate and comprehensible as a result. A professional dream is transparent and free access to science.

Photo: Martin Lugger

W

hat are you currently working on?

Hospitals collect large amounts of data for every patient. However, this data is still not being utilised effectively for research. We intend to change that. When a patient who has, for example, suffered a spinal cord injury is admitted, the hospital precisely measures arterial blood pressure.

We believe that the study of this data can be helpful in the treatment of other patients. We may even be able to predict the progression of the injury using these daily collected data.

“I want to facilitate the work of other researchers.”

D. Torres-Espin has succeeded in obtaining a faculty position at the University of California San Francisco helped by funding from Wings for Life. In his project he explores Big Data and machine learning, in which computers read a large amount of data and recognise patterns. These patterns could enable a more precise determination of the future condition of a patient. Read more at: www.wingsforlife.com/research. ... LIFE | 57

Dustine West, 48, had worked hard to get his dream job, when one traumatic journey home changed his life as he knew it.

Now Dustine is overcoming his accident by putting pen to paper.

58 | WINGS FOR ...

Photos: Richie Hopson, Private

SPINAL CORD INJURY

Dustine can barely move his hands, yet he paints beautiful works of art.

... LIFE | 59

SPINAL CORD INJURY

“After getting on my bike I do not remember anything else, for all I knew I was working and then woke up in a hospital bed not being able to talk or move.”

A

another person drove past and stopped, getting him the help, he needed. The driver that hit Dustine was charged for being under the influence.

“Your brain has a way of blanking out trauma, so in a way I am grateful that I can’t remember any pain at the time of the accident.”

As a result of that accident, Dustine sustained multiple injuries including his spinal cord injury. He is classified as an incomplete tetraplegic, meaning both his legs and his arms are affected.

After waking up from being in an induced coma, a doctor came to tell Dustine and his family, who rushed to the hospital to be around him as soon as they heard the news, about his injuries. “They said you won’t be able to feel your legs or ever walk again. I had so many questions I needed answering. Where am I? Why am I here? How did this happen? I felt so scared.” Going from being an extremely active person with his job, for Dustine, this was a complete shock. It was a situation that no one could ever imA DAY LIKE NO OTHER agine being in. “The seriousness Ten years ago, January 16th was of it all was a lot to take in, not just a day that changed Dustine’s life for me but my family.” forever. After working his shift, Dustine loved his job with the British Transport Dustine was transferred to a Dustine had his final cup of cofPolice. spinal rehabilitation unit, where fee and got on his bike to take his he stayed for seven months. His usual route home. In some sense, wife was at his side every day. “You had your bad a blessing that, he can’t recall the details of the days and then your better days. My saving grace accident: “After getting on my bike I do not rewas my wife. She was always there to support me. member anything else, for all I knew I was workMy family would encourage me to push myself, ing and then woke up in a hospital bed not being especially with physio, I was extremely lucky to able to talk or move.” Dustine was the victim of have them there.” a hit and run on an unlit motorway. Thankfully fter working in security for 11 years, Dustine thought it was time to take on a new life challenge and do a job that he had always dreamed of doing.

“It took me a while to pluck up the courage to do it. It was a really big deal for me to get into the police, as I was risking everything by leaving a job that I was so secure in. There wasn’t a day I didn’t feel excited to wake up and go to work, even with the early starts”, Dustine gleams. He discusses his time working with the police with great pride.

All of Dustine’s hard work and determination to do well in the job paid off, as he received two commendations in his first year. “My team were great.

I realised you had to learn quickly on the job. There was nothing to prepare you for what you had to deal with every day. Quite like when someone tells you that you will never walk again.”

60 | WINGS FOR ...

Dustine loves spending time with his family, they live in their family home in Kent.

The walls in Dustine’s house are covered in his artwork. He enjoys painting portraits of famous people.

... LIFE | 61

SPINAL CORD INJURY

Dustine spends many hours painting in this space.

“I would do anything to go back to that stage of my life.”

62 | WINGS FOR ...

STIPPLING THROUGH REALITY One day at the unit, an occupational therapist came over to Dustine and encouraged him to take up his pre-accident hobby of drawing and join the weekly art class. Dustine was reluctant, with the result of his accident leaving him unable to move his arm; he thought to himself, “how will I be able to draw when I can’t move my hand very well?”, but he attended the class, and this is when he fell back in love with an old flame of his…his pen and paper.

“I have always loved art, from when I was a young boy in school to my adult days where I would be asked to do some sketches for my friends. I lost touch of it when I was with the police, as I didn’t have a lot of free time.” Dustine found that Stippling, a drawing technique in which areas of light and shadows are created with nothing but dots, was a way that he could accommodate the limited movement he has with his hand, to produce fantastic drawings.

Stippling helped Dustine in the darkest of times: “It helped me when I was in the rehab unit, mostly when everyone had gone home. When I was alone, this would be the time I would start to reflect and dwell on what happened to me.

Art helped me deal with it.” For Dustine, art has helped him escape his reality and adapt to his life being spinal cord injured.

LIVING IN HOPE Most days, you will find Dustine tucked away in his office, with the radio on, drawing the day away. In his house, there are boxes full of his dramatic and eye-catching portraits. Another great thing to note about Dustine, is his drive to bring about change in the disability community.

“I want to help break the stigma on how people view those who are in a wheelchair, so I do what I can to help with disability rights”. Having worked alongside many charities and companies, he explains that this has helped him reach out to new audiences with his drawings. “I want people to know that yes, I am in a wheelchair, my legs don’t work properly but I am still human and can have a hobby”.

Many individual dots form breathtaking works of art. Dustine’s motif: a Formula 1 helmet.

There’s no doubt that Dustine, being the family man that he is, appreciates and recognises how fortunate he is after his accident. “Don’t get me wrong the last ten years I have been able to spend more quality time with my family. I have gone through frustrations, and it has taken a while to feel this way, but life is too short. You have to look on the plus side.” Despite living a full and happy life, where he’s able to pursue his love of art, Dustine’s eyes light up at the mention of there being a cure. “Where can I sign up?!”

He was just at the peak of his career, ready to take it to the next level and take on more responsibility. When Dustine had his accident and learnt of his injury, his wife gave up her job to look after him. If there was a cure, not only would Dustine get his independence back and go back to working his dream job in the police; his wife would also be able to work again. “Me and my family were so happy before my accident. I would do anything to go back to that stage of my life.” ... LIFE | 63

SCIENCE

Test Your Knowledge Are you familiar with the human nervous system? This is your chance to put your knowledge to the ultimate test. Prove your brainpower by tackling the tricky questions in our quiz. Give it a go! No cheating, please!

Among other elements, the central nervous system encompasses…

A. the cerebrum, the spinal cord, and the sciatic nerve.

B. the cerebrum, the trigeminal nerve, and the spinal cord.

C. the cerebrum, the cerebellum, and the spinal cord.

D. the cerebellum, the spinal cord, and the sciatic nerve.

The autonomic nervous system controls…

A. the function of internal organs, e.g. breathing, digestion, and heartbeat.

B. the computer in an electrical car.

C. the motor skills.

D. the sensory system.

The sympathetic nervous system is…

A. a really understanding person.

B. part of the autonomic nervous system.

C. part of the sciatic nerve.

D. a cranial nerve responsible for facial expressions.

64 | WINGS FOR ...

Paraplegia may result from damage to…

A. the bone marrow.

B. the parasympathetic nervous system.

C. the spinal cord.

D. the spinal column.

“Liquor cerebrospinalis” is a term for…

A. a sweet, alcoholic beverage.

B. one of the three cerebral membranes.

C. the fluid, surrounding the brain and the spinal cord.

D. a cerebral haemorrhage.

What is the average weight of the adult human spinal cord?

A. 35 grams B. 95 grams C. 215 grams D. 330 grams

Does a spinal cord injury always lead to paralysis?

The Latin term for the spinal cord is…

A. No. B. Yes. C. Yes, but only when the intervertebral discs are damaged too.

D. Yes, but only if the vertebral body suffers a comminuted fracture.

Who or what is referred to as “pia mater”?

A. The soft part of the placenta.

B. A Hawaiian sweet potato.

C. The scientific coordinator at Wings for Life.

D. A soft meninx.

A. medulla spinalis.

B. cerebrum.

C. cortex cerebri.

D. adductor longus.

The term “tetraplegic” refers to…

A. a well-sealed milk carton.

B. a person who suffered a high-level spinal cord injury.

C. a philosopher of the late classical era.

D. a neuroscientist.

What is a motor neuron?

A. A component of a neurotransmitter.

B. An African motorbike taxi.

C. A nerve cell within the motor nervous system.

D. A type of smartphone.

>9

3–9

<3

More than 9 correct answers

3 to 9 correct answers

Less than 3 correct answers

My goodness, you must be a scientist or expert. Your almost infinite knowledge about the brain, spinal cord, and nervous system awes us.

Hats off to you!

A solid result! You know your body fairly well, maybe even very well. The next logical step is to expand your knowledge even further.

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

Answers: Question 1: C; Question 2: A; Question 3: B; Question 4: C; Question 5: C; Question 6: A; Question 7: A; Question 8: D; Question 9: A; Question 10: B; Question 11: C ... LIFE | 65

RESEARCH

Your donations at work

Funded research projects

64

1

GOAL

ONGOING

RESEARCH PROJECTS

33% Basic Research

Investigation of fundamental scientific questions

FIND A CURE FOR SPINAL CORD INJURY

15

Examination of findings in living organisms

Reconstruction

Bioinformatic

9

4

Neuroprotection

5

Remyelination

1

8

Imaging

20

Plasticity

1

9

7 Rehabilitation

25% Clinical Research

COUNTRIES

PORTUGAL SPAIN SWEDEN SWITZERLAND THE NETHERLANDS UK USA

RESEARCH AREAS

42% Preclinical Research

AUSTRALIA AUSTRIA BELGIUM CANADA FINLAND GERMANY ISRAEL ITALY

Regeneration

Secondary Damage

TOTAL NUMBER OF FUNDED RESEARCH PROJECTS 259 11

19

25

36

44

55

63

82

111

125

144

172

191

211

239

2006

2007

2008

2009

2010

2011

2012

2013

2014

2015

2016

2017

2018

2019

2020

Testing of therapies and medication in humans

3 Years - research projects get funded on average 66 | WINGS FOR ...

2021

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

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100% of every donation goes to spinal cord research.

Thank you so much for your support!

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