Confronting the future Wings for Life Spinal Cord Research Foundation We fly to the moon. We sprint 100 metres in less than ten seconds, and we are able to transplant organs and limbs. We achieve the impossible – all the time and every day anew. To find a cure for spinal cord injury is the principal aim of the Wings for Life Foundation. “The question is not if we can find effective treatments and cures, the question is when”, says Prof. Jan Schwab, the foundation’s scientific director, dispelling any doubts about the feasibility of the ambitious project. An injury to the spinal cord is generally thought to be incurable and the resulting inability of the injured person to use both legs and therefore being confined to a wheelchair is regarded as being inevitable. For the 42-year old Jan Schwab, this is only “still” the case, not aiming at people’s hopes but referring to the considerable progress and findings made in spinal cord research since the 1990s. Founded in 2004 as a non-profit organisation, the “Wings for Life Spinal Cord Research Foundation” has managed to bring the world’s most renowned scientists together in order to analyse the problems at hand and to develop strategies for a solution. One of the elementary tasks of privately funded foundations is to improve people’s understanding of illnesses and their underlying mechanisms as well as to provide information on the progress regarding rehabilitation. Despite more than 2.7 million paralysed patients worldwide – with their number increasing by almost 130,000 per year – spinal cord injury does not belong to the so called “widespread diseases”. As a consequence, the pharmaceutical industry’s interest in exploring treatments is limited for purely financial reasons. Being a non-profit organisation, however, Wings for Life does not pursue any financial goals, and it does not have to make profit. Therefore, the foundation’s possibilities and scope for strategic freedom are much greater than it is the case for profit-oriented pharmaceutical and biotechnology companies. Top priority is given to the fundamental neurobiological and structural problems and the solution hereto. With Prof. Jan Schwab, the scientific board of Wings for Life is headed by one of the most distinguished scientists in the field. His internationally acknowledged expertise allows basic research and clinical application to be brought together on a global level, thus improving the cooperation of different research teams. They all have one common goal: the functional recovery after spinal cord injuries. Summarised in a multi-column model, the foundation focuses on the following areas: • • • • • Supporting cutting-edge international research projects Integrating and processing existing clinical trials Intensifying scientific communication by analysing available treatments, cooperating with the „Nature Reviews“ scientific journal, membership in the ICCP (International Campaign for Cures of Paralysis) - the top-class scientific body - and participating in international conferences Preventing cervical spinal cord injuries Having experts and expertise of the highest calibre within the foundation 1 The work of Wings for Life is clearly structured and anchored within the foundation, thus exceeding the general tasks of a foundation by far. Out of deference to the patients, the organisation does not commit itself to a certain point in time when the objectives will be achieved. “There is no greater commitment than a promise. And there is no excuse for disappointing legitimate hopes”, so the foundation’s guiding principle. This was the promise made by a father to his paralysed son on behalf of all those who have suffered spinal cord injuries. The 26-year old has been bound to the wheelchair for seven years now, and is convinced that one day he will be able to use his legs again. His name and the confidence he radiates stand for more than 2.7 million people worldwide. In order to increase their chances of recovery, Heinz Kinigadner and Dietrich Mateschitz, founder of Red Bull, initiated the Wings for Life Foundation in 2004: “The crucial impulse for setting up the foundation was a very personal one and perhaps it is above all this personal approach which keeps us going. All findings, approaches and methods obtained by the research projects funded by Wings for Life will be made available to those in need - without limitations.” The story of the motor sport family Kinigadner and the so far last stroke of fate suffered by them – the accident of son Hannes in July 2003 – is well-known, but not the fact that sports in general accounts for only 6 percent of all spinal cord paralyses, and only 3 percent can be attributed to extreme sports. The risk of suffering such a tremendously serious accident is five times higher in everyday road traffic: 50 percent of all injuries to the central nervous system are caused by vehicular accidents on the way to school, to work or in people’s spare time. If asked for the cause of the accident, almost one in four patients (24 percent) tell you that they fell when they were hiking in the mountains, building their houses, tiling a roof or cleaning windows. The remaining 16 percent are composed – among other things – of injuries caused by gunshots, stabbing or alike. The average age of the injured persons is 33 years in a ratio of four to one between men and women; life expectancy is nearly normal. The result: a “typical” patient will be bound to the wheelchair for more than 40 years. The consequences of a spinal cord injury depend on the position and the severity of the injury: 52 percent of the injured persons are paraplegic, i.e. they cannot feel or control their legs; 46 percent are tetraplegic, which means that these patients have suffered cervical (neck) injuries and can neither feel nor control their legs and arms. Researching treatments for spinal cord injuries are a relatively new field of activity as injuries to the spinal cord were for a long time generally considered to be incurable. Only the results of Lisa Schnell’s and Martin Schwab’s in vivo research 20 years ago caused this dogma to sway. The two scientists were able to prove that with the help of a certain “treatment” rats with spinal cord injuries could in fact regain considerable functional abilities. These findings caused related research activities and publications to increase rapidly ever since. Despite this positive development and the successes made in animal testing, however, no revolutionary progress has so far been made in the field of clinical treatments of spinal cord injuries. This is largely owing to the fact that there are no binding 2 standards for such studies, which would provide the basis for generally accepted procedures and comparable results for evaluating the effectiveness of a treatment. “Together with other recognised privately funded foundations, such as the Christopher Reeve Paralysis Foundation for example, which bundle their strengths in the ICCP (the umbrella organisation of the most important foundations in the field of spinal cord injury research), Wings for Life is endeavouring to establish the necessary parameters”, explains Prof. Jan Schwab who was presented with the prestigious Ludwig Guttmann Award of the German Medical Society for Paraplegia (DMGP) in October 2006 for his fundamental work promoting the comprehensive rehabilitation of paraplegics. Being a physician and neurobiologist, Prof. Schwab is not only the scientific director of the foundation, but is also actively doing research in this field. Despite his young age he is one of the most distinguished and talented young scientists in this field of expertise worldwide. From 1999 until 2003, he worked at the Institute for Brain Research at the University of Tübingen. After having spent some time at the Centre National de la Recherche Scientifique (CNRS) in Paris, the physician and experimental neurologist has joined the ranks of the top scientists at Harvard Medical School in Boston, USA, in 2005. In the same year, he was given the Hannelore Kohl Award and the German Pain Award for his work in the area of neurotraumatology. And this is exactly what distinguishes Wings for Life from many other privately funded foundations. There is no doubt that the foundation’s top-class scientific expertise is the ideal basis for tackling the fundamental and complicated problems in the field of spinal cord research successfully. This approach is additionally backed by an international body of experts (“scientific board”) in the field of spinal cord research comprising Prof. Samuel David (McGill University, Canada), Prof. Zhigang He (Harvard Medical School, USA), Prof. Stephen Strittmatter (Yale University, USA), Prof. Ulrich Dirnagl (Charité Humbold University, Germany) and Prof. Hans Lassmann (Medical University Vienna, Austria). In the medium term, this council will be expanded to include further international top scientists and clinicians. One of the main tasks of the non-profit foundation is financing research activities. By supporting international cutting-edge research and multidisciplinary cooperation, Wings for Life is contributing to “accelerating” progress in the search for an effective treatment of spinal cord injuries. 100 percent of the development funds generated from donations are invested in activities of that kind. There are no inflated administrative machineries, exaggerated advance investments or infrastructure costs which the foundation has to bear. Wings for Life established an environment which guarantees that all donations received are used exclusively for promising research projects. Since 2004, Wings for Life was able to support 36 research projects in total worldwide. All projects which receive funding aim to improve the rehabilitation after a spinal cord injury, to stop the spreading of the damage or to improve the regeneration of the nervous system. Many different approaches and strategies are pursued: from electronic stimulation, direct or indirect, to intervention directly at the lesion site, for example by molecular manipulation of nerve-fibre growth by means of cell transplantation and genetic therapy. Stringent scientific criteria thus form the basis of Wings for Life, which was the reason why the foundation was accepted as the first German-speaking member in the circle of only thirteen members 3 with voting rights of the internationally recognised umbrella organisation ICCP. For the Austrian foundation, the membership in the ICCP is not only the official acknowledgement of the foundation’s well-founded scientific work but also offers valuable synergies by increasing and improving the opportunities to cooperate and exchange information with other organisations. “The more people share a vision, the closer this vision comes to become reality”, says Pit Beirer, Head of Motorsport at KTM, former Motocross Champion and bound to a wheelchair himself. Together with others, like for example Felix Baumgartner, holder of several world records in B.A.S.E. jumping, Red Bull Air Race pilot Mike Mangold and David Coulthard, ex formular 1 driver, he has been supporting Wings for Life from the very beginning. On the one hand to sharpen the perception of the general public for the handicap which people with spinal cord injuries have to live with, and on the other hand to contribute his share to the goal of “accelerating the future” in this field. “Again and again, athletes achieve seemingly impossible goals. In its field of activity, Wings for Life is trying to achieve exactly the same goal, the benefits for the general public are disproportionately higher, however”, explains WFL ambassador Felix Baumgartner, who regards his support for the foundation as being a matter of course. Being a privately funded non-profit organisation, the foundation depends on well-known supporters and donations. Maybe their professions or the environments these ambassadors live in have sharpened their views for the really important things in life, and they have learned that the danger of suffering an injury which will change your life completely is not always to be found in the extreme but often in everyday life, where 90 percent of all accidents with chronic spinal cord injuries happen. For more than 2.7 million people worldwide a breakthrough in spinal cord research would mean they could return to a normal everyday life, step by step. Everyday life – this is what concerns us all, all the time and every day anew. Living a life without wheelchair – not yet a matter of course but a bright prospect for the future. Come on and take a step further towards the future with us and support Wings for Life with a donation! Donations account United Kingdom Wings for Life Spinal Cord Research Foundation HSBC Bank code 400530 • Account No. 8388 2101 IBAN: GB72MIDL40053083882101 • BIC: MIDLGB22 Donations account Austria Wings for Life Spinal Cord Research Foundation Bankhaus Carl Spängler & Co, Salzburg Bank Code 19530 • Account No. 1000 11911 IBAN: AT27 1953 0001 0001 1911 • SWIFT BIC: SPAEAT2S 4 Donations account Germany Wings for Life Spinal Cord Research e.V. Bayern LB Bank Code 700 500 00 • Account No. 11911 IBAN: DE13 7005 0000 0000 0119 11 • SWIFT BIC: BYLADEMM You can also donate online on the foundation’s homepage. Related websites: Wings for Life – Spinal Cord Research Foundation www.wingsforlife.com Umbrella organisation ICCP www.campaignforcure.org/iccp/ Contact: Sabine Beck Wings for Life Spinal Cord Research Foundation, Fürstenallee 4, A-5020 Salzburg, Austria Phone: +43 (0) 662 6582-7571, Mobile: +43 (0)664 83 97 723, Sabine.beck@wingsforlife.com 5