What were your feelings and thoughts about our field before SOSORT was formed?
Jean Claude DeMauroy
In Europe, the first basic education meeting on scoliosis was organized in Lyon in 1979 by Pierre Stagnara and I was the secretary. It brought together more than 1000 participants.
Thereafter, the need to bring together physiotherapists, orthothists and physiatrists proved to be indispensable. The first European Society (European Research Rehabilitation Society) was created in 1990 and I had the honor of being a founding member.
In 1993, an extension of the European Physiotherapy Group of Scoliosis (GEKTS) was created by Paul Ducongé, it later took the name of (International Society of Research and Studies on Spine) SIRER of which I am still the President.
SIRER organized a congress per year alternately in France, Italy and Spain. The oldest members of SOSORT were part of it (Josette in particular).
SIRER published a journal: European Spinal Resonances.
In 2004, many solicitations outside Europe led to the international dimension. SOSORT was born.
Theodoros B. Grivas
When a physician offers treatment for a condition he must know and be able to offer the full range of therapies that can be offered for this condition and not just a limited range of therapies. Some of the most well-known international associations for scoliosis before the creation of SOSORT were the Scoliosis Research Society (SRS), the European Spinal Deformity Society (ESDS), later the European Spine Society (ESS), and the International Research Society for Spinal Deformity, (IRSSD). Being a member of these, I realized that the study of non-surgical treatment of scoliosis was a very small part of their work. Also in recent decades the non-surgical treatment of scoliosis has not been well studied and applied in many countries. Additionally the implementation of the School Screening program, which is the proper procedure for preventing this deformity, has been weakened or discontinued in the countries where originally applied. Yet the members of the above best known international associations for scoliosis, before the creation of SOSORT, were not completely familiar with such prevention programs. And prevention is very important! Is there anything better than protecting children’s health and preventing various diseases? Children are our future. A “healthy” younger generation anticipates a better quality of life for the older generations, apart from all other obvious benefits for the economy, etc. Yet we should always remember that we must be motivated and guided by the ancient Greek saying, according to which ‘it is better to prevent than to treat’. Prevention must be a standard policy in civilized societies with medical systems caring about people’s wellbeing and not about statistics, epidemiology or only money. We always have to remember what the basic principle in the cradle of western civilization, ancient Greece, was. Ancient Greeks used to say that ‘metron of everything is man’; the measure, in other words, of appraising everything is only the human being, nothing else.
Toru Maruyama
There were little opportunities to make presentations about conservative treatment for scoliosis. SRS accepted only a few presentations regarding conservative treatment. On IRSSD there were many presentations difficult to understand, for example, regarding the estimation of 3-D deformity itself.
Stefano Negrini
I would say frustration.
I started my career as researcher in the field of scoliosis, but my papers were all systematically rejected by journals of the field, as if there was no interest in considering scoliosis from a conservative point of view. Consequently, I had to move to low back pain to start publishing.
Moreover, I was very much interested in treating clinically my scoliosis patients in the best way, but I did not have a place where to go and learn, discussing with colleagues, about what I was everyday doing. I tried many times to go to the Scoliosis Research Society (SRS) Meeting, but every time, looking at the program, there were so few presentations interesting for someone like me not doing surgery, that in the end I never went. There still was the International Research Society on Spinal Deformities (IRSSD), a Society started during a Meeting in Pescara in 1994 to which I participated, but also there only a couple of sessions were devoted to conservative treatment: I went there, but not so frequently. I preferred to systematically go to the Meetings of the International Society for the Study of the Lumbar Spine (ISSLS), and incredible society of smart and tough researchers: it was for me the model I tried to apply in the development of SOSORT. A free place for discussions and learning starting from serious research and not stubborn opinions.
Finally, I was frustrated also because apparently in the world the standard treatment for scoliosis was becoming “wait & see”. I could not understand why this was happening, when it was so clear to me that 1) surgery was the last remedy when everything before failed (quoted from Stagnara); 2) surgery was avoidable most of the time with a good brace; 3) braces were clearly effective.
Manuel Rigo
During the 90’s I was fully dedicated to patient’s care at the clinic but noting an increased interest from physiotherapists to learn about specific physiotherapy (Schroth method is what they wanted to learn from us) and Orthotist about Chêneau brace concept. Thus, forced by the need to give a more complete vision about our field I started to attend meetings of people with similar interest, like the GKTS (late 80’s), later GEKTS (The European Group for Scoliosis Physiotherapy), which converted in the SIRER (already a multidisciplinary group). My primary interest was learning more to care better and to educate better. Among many other colleagues, at the SIRER, I was touched by the strong personality, knowledge and experience of Jean Claude de Mauroy, Hans Rudolf Weiss and Stefano Negrini and probably due to the limited influence of the SIRER (basically restricted to Europe), we started to attend the IRSSD meetings to present our work on conservative management of spinal deformities. From this moment, probably all of us noted that we had a lot to learn but also something to show and share.
Why did you decide to join the Barcelona Meeting and to participate in the foundation of SOSORT?
Jean Claude De Mauroy
My friend Manuel Rigo asked me to participate and of course I responded positively to his invitation.
Theodoros B. Grivas
These reasons triggered me to participate in the establishment of a Society that intent to serve the above aims which were uncared for until then. It was therefore a great pleasure to be a member of the small international team of wonderful people, the founders, who shared common dreams and laid the foundations in 2004 to establish SOSORT.
Toru Maruyama
In 2004 at Vancouver we, Stefano Negrini, (Tomasz Kotwicki), Hans Rudolf Weiss, Jacek Durmala and I, decided to make a new society specific to the conservative treatment for scoliosis.
Stefano Negrini
I still remember one evening when I received a phone call from Manuel Rigo, with whom we shared the adventure of launching the SIRER (Societé International d’Etude sur le Rachis – International Society for the Study of the Spine) – a society that had the first meeting in Milan in 1996, and the second in Barcelona in 1997. A great first experiment, that partly failed because the SIRER never become a serious and rigorous scientific society and was mostly an educational one: it worked well, but not well enough to be able to change the world – it was clear to me from ISSLS that only science could do it.
That evening Manuel asked me if I wanted to join a little group of friends that during the last IRSSD Meeting had decided to launch this Conference in Barcelona. I was enthusiast. I immediately thought of having another chance after the SIRER. And I jumped in with all the possible enthusiasm.
When we speak of the foundation of SOSORT, was not at all clear at the start was exactly if to have a Society or not. In fact, the start was to have first a serious scientific Meeting, even if I already had in mind a Society. In Barcelona, at dinner together, we discussed the option of a society, but most of the future founders felt that we did not have enough scientific strength to be able to have a scientific society and a meeting every year. Consequently, in Barcelona we decided to launch a Study Group (I am proud to have proposed the acronym SOSORT – including the key words scoliosis, scientific, rehabilitation and orthopedics, but also SOS and ORT since we had to save the field of scoliosis). The first S of SOSORT in 2004 meant Study group, even if the possibility to change to Society was already there.
Manuel Rigo
As far as I can remember, after some years attending the IRSSD meetings, we probably felt that the time sharing knowledge and experience about conservative management of scoliosis in the meetings (IRSSD meetings were celebrated every two years) was insufficient and with the main momentum from Hans Rudolf Weiss and the highest interest from Stefano Negrini, Theo Grivas, Toru Maruyama, Tomasz Kotwicki, Jean Claude de Mauroy and Joe O’Brien accepting to form part of the scientific committee, I was asked to organized in a very short time, in Barcelona 2004, the so called First International Conference on Conservative Management of Spinal Deformities. During the Social Dinner, Stefano Negrini proposed about starting a Study Group under the name SOSORT and later on, this I am not sure because I was not there, some of the Barcelona’s group met in Vancouver for the IRSSD meeting and agreed in moving from Study Group to Scientific Society. In 2005, we met again in Milano and decided officially to start the SOSORT, with the first official meeting to be celebrated in 2006 in Poznan, Poland.
What did you want from SOSORT at the start?
Jean Claude De Mauroy
Manuel was surrounded by a very high-level team: Stefano, the best secretary and organizer I’ve ever known, Hans Rudolf and his journal “Scoliosis”, Joe and his fantastic patient association, Theo the encyclopedia (Burwell was part of the SIRER), Tomasz fellow of Dubousset so very conservative and Toru who represented the rest of the world.
Theodoros B. Grivas
The best collection of international expert on the issue, including Manuel, Stefano, Hans Rudolf, Joe, Tomasz , Toru, Jean Claude. An amazing team.
Toru Maruyama
We got opportunities to make presentations and discuss about conservative treatment.
Stefano Negrini
Serious research, possibility to discuss with colleagues doing the same job, possibility to learn from the others, progress of the field through research, external recognition of what we were doing.
Manuel Rigo
My personal objective was always to learn about the clinical experience of many other colleagues. Thus, this is what I wanted at the beginning from the SOSORT. Clinical experience in combination with scientific evidence is essential in medicine and I have had always the expectation that sharing our clinical experience and trying to produce the best scientific evidence would serve to establish a general consensus not only about what we can do but mainly about we should stop doing in order not to generate more problems than benefit to the population affected by scoliosis.
What do you remember of the first period of SOSORT (from Barcelona to Poznan)?
Jean Claude De Mauroy
I quickly felt the great synergy of our different teams, no doubt related to our friendship and the great respect of others that animated Manuel. Our resources were limited, but largely compensate by our mail exchanges which constituted a fantastic brain storming. It was while listening to our friends that we were preparing the next meeting. We were not very numerous, but we were all animated by the same faith.
Theodoros B. Grivas
The friendly relations that developed between us were the main feature of the team that was “very well tied up”. From the beginning this small group of people managed to enlarge the society, to prepare properly the meetings, and to increase the pertinent science. As a result SOSORT became internationally well respected, dominating in its field.
Stefano Negrini
I mostly remember the sense of doing something important and the friendship. I remember the meeting we had in Barcelona at Manuel’s house, with paella included. I remember Manuel coming to Italy to go together to the notary and sign the statute of the Society. I remember going to Manuel in Barcelona and then with Michele to Bad Sobenheim to see what my friends and colleagues were doing (I already had quite good knowledge of Lyon work). It was friendship and alliance and vision. There were also difficulties, obviously, but these have disappeared from my memory.
Manuel Rigo
The big enthusiasm of people coming from different health professions working in the promotion of the multidisciplinary and team approach. The meetings to start a new multidisciplinary scientific society were also very exciting. In all these meetings the respect to others and the transversality among the different health professions forming part of the teams was noticeable. Also, the start of Scoliosis Journal was a special moment.
What were your feelings and thoughts during SOSORT foundation, starting from the Meeting in Barcelona and foundation of SOSORT Study Group, to the Consensus Meeting in Milan and SOSORT Foundation, to the first SOSORT Meeting in Poznan)?
Jean Claude De Mauroy
I was quickly convinced that SOSORT was off to a good start. SOSORT met a real need and the rapid progression of the evaluation methods associated with advances in bracing technology made possible research based on scientific evidence, which was not the case before.
Theodoros B. Grivas
I share Jean Claude’s remarks and I do believe that SOSORT was off not only to a good start but one start predicting success. This society initiated covering what was missing on all aspects of prevention, clinical evaluation, bracing, physiotheraputic treatment, yet stimulating research on all issues of the non-operative treatment.
Toru Mayurama
Number of the presentation was small.
Also, level of some presentations was not high enough to the standard of the international meeting
Stefano Negrini
During the first meeting in Barcelona I wanted to go for a society, but there was no agreement and we preliminarly went for a Study Group.
I also wanted to go for an annual meeting because we would have not otherwise had a real society but only a congress, but the prevailing idea was that we would have had not enough new scientific material on annual basis. For this reason I proposed the Consensus Meeting in Milan – in my mind this was also very much needed and a piece of research: we were so much different that reaching starting agreement had to be the starting point. With this compromise we started to see each other annually.
In Poznan everything had already been done, and that was the 1st Meeting of the new Society: SOSORT!
Manuel Rigo
My main feeling at that time was the surprise, the nice surprise, so positive feeling, about the amount of professionals from many different parts of the world with the same interest in offering an integrative scoliosis care model based on Biopsychosocial and Evidence Informed Medicine.
What do you think of SOSORT now? Does SOSORT fulfill the expectations you had at the start?
Jean Claude De Mauroy
It is often difficult to preserve the age pyramid in a Society. We are very proud to see so many passionate young people taking charge of the future of SOSORT.
Theodoros B. Grivas
Now the society is increasing its membership and many enthusiastic new people are involved in all activities of SOSORT. This predicts a flourishing future.
Toru Maruyama
Yes, SOSORT has grown up beyond my expectations.
Stefano Negrini
Yes. No, in fact. It is beyond any expectation. I would have never thought to reach something like what we have now. I think we had a vision, but SOSORT is more than that vision.
Manuel Rigo
SOSORT has become a fully established society nowadays, much more professionalized in its organization, with a better defined tasks for the Board and Committees. The main event of the SOSORT continues being the Annual Meeting yet. The SOSORT has fulfilled my expectations in terms of personal education, I have learned a lot during all these years from many relevant colleagues presenting papers at the scientific sessions and also from those giving Keynote lectures. On the other side I think that the SOSORT has contributed to expand the importance of rehabilitation and non-surgical treatment in a serious way.
In your perspective what have been the biggest difficulties and challenges at the start?
Jean Claude De Mauroy
The biggest initial challenge was the creation by Tomasz of a prospective brace evaluation database. When I succeeded him as a webmaster, I inherited this database. Although at that time the legislation was more flexible, we quickly realized that it was very difficult to compare the different braces as the structure in which we worked was influencing the results. So, we had to abandon this project.
Theodoros B. Grivas
Gaining respect from the rest of the spinal societies required attention, much work and good communication with them.
Toru Maruyama
Most surgeons were doubtful about the effectiveness of brace treatment. Our society seemed meaningless for them. What changed this situation were Weinstein’s paper and our efforts.
Stefano Negrini
Everything. Literally everything. Nobody of us had any experience in starting something as big as an international society. When you are into a society there is a structure already in place. There are usages. There are things that everybody knows should go in a specific way. There is even a language that make possible to understand each other. When we started SOSORT we had to start it all. To define the Statute, the internal rules. To invent a structure for the meeting. To develop lectures, invited speakers, prizes. Nothing was there, everything had to be invented. And then, attracting people; having something more than just a meeting. And finally, being recognized, having our treatments and results recognized by the scientific community, that was apparently ignoring us. All this was an incredible challenge ahead of us.
Manuel Rigo
The biggest difficulty was moving forward the SOSORT from a very little group of enthusiastic people. At that time, only few teams in the world were offering a rehabilitation team approach, so we had too many patients to care, too much clinical work. All of the founders had not so much time to give to the SOSORT, so we all had to find this time to make the SOSORT moving forward and this supposed a big wear for many of us. There was some logical dysfunction at the beginning from strong personalities and ego, but I think this is not exclusive for the SOSORT. Obviously, many people, sometimes in a discreet way, has contributed to the SOSORT success, but I must say here that the SOSORT would not be what it is nowadays without the hard work first from Weiss and later on, for a longer period of time from Theo Grivas, as Editors in Chief, behind Scoliosis Journal, and the big support and contribution to the SOSORT Board from the Italian ISICO group. Stefano Negrini and all his group deserve to be recognized by the SOSORT for both contributions, to the SOSORT Board all these years and also for being challenger in increasing the scientific level of the Society. On the other hand, and answering the second part of this question, I would remark that the main challenger has been the capability of organizing an Annual Meeting with no interruption since 2004, considering that meetings have been organized always by a local host, taking a big personal risk, expecting to cover expenses from registrations, with very low level of external support from commercial companies (few and always the same, thanks for that). Thus, an applause to Stefano Negrini (two times), Tomas Kotwicki, Theo Grivas, Joe O’Brien, Jean Claude de Mauroy (Two times), Charles Rivard, Patrick Knott, Helmut Diers, Jacek Durmala, Eric Parent, Suncica Bulat Würshing and Grant Wood.
What from your perspective have been the biggest achievements of SOSORT during its existence?
Jean Claude De Mauroy
The action of SOSORT has been considerable:
Creating a true scientific community
Consideration and respect of our colleagues surgeons,
Elaboration of consensus and guidelines adopted by the health systems of many countries,
Research and publications based on scientific evidence with significant increase of non-surgical publications,
Basic education in many countries …
Theodoros B. Grivas
The biggest achievements of SOSORT during its existence are the following:
- a scientific society was formed
- SOSORT is well respected from the rest of the spinal societies
- published consensus papers and guidelines for non-operative scoliosis treatment which are adopted by physicians of many countries,
- its members implemented research and completed publications based on scientific evidence
- During the annual meetings its educational pre-meeting program in many countries familiarizes the attendees with the principles and practices served by the society.
- The launch of SOSORT journal, initially named “Scoliosis” and later “Scoliosis and Spinal Disorders” which unfortunately was stopped. This journal offered a lot to the heritage of this Society in many ways.
Toru Maruyama
Making contact with SRS and make surgeons notice to our society and conservative treatment.
Stefano Negrini
The biggest achievement is that now conservative scoliosis treatment is considered as a real option. SOSORT has been of paramount importance to give ground to the results of the BRAIST study, complimenting and increasing the knowledge on the topic. SOSORT raised the awareness among professionals and also the public. Moreover, it offers the only real forum to allow the growth of science in our field.
Manuel Rigo
The Annual Meeting, Scoliosis Journal, expansion of the knowledge on rehabilitation and orthopaedic treatment of scoliosis based on the multidisciplinary team approach and Evidence Informed Medicine model.
What do you hope for the future of SOSORT in the next 10 years?
Jean Claude De Mauroy
The experience is not transferable, but it allows the youngest to find their way more easily. I wish that each of the members, whom I knew well through the website, can bloom in a friendly atmosphere and continue the work that we initiated. I hope that technology does not replace the contact with the patient and that he remains the center of our concerns.
Theodoros B. Grivas
I hope that SOSORT will grow further, it will continue to serve the the people in line with the founders’ dreams, to refrain from any activity that is foreign to the scientific nature of the society and to acquire a new own journal that will be properly indexed and with an official IF.
Toru Mayurama
To restore our journal as soon as possible
Stefano Negrini
- Remain a fully scientic and evidence-based society- this to me is the only way to the future and to be recognized
- Grow even more
- Strengthen research
- Attract other researchers to the field
- Remain strongly multidiscplinary- for this we need more physicians and orthotists
- Go beyond methods and schools to the core of what we’re doing (what is similar, what is different, what must be done and what not)
- Increase educational efforts on bracing and exercises beyond the single schools
- Produce more educational tools online and perhaps also in print
These are just some of the needs. Most of all keep a constant eye on what is needed to grow the services for our patients, and being able to adapt to the new challenges that the future will propose.
Finally, a few words. In SOSORT I have found incredible colleagues and friends. Each of us with different character and sensibilities, but all together we have been a tremendous team. I will never ever forget what we have done, and I hope that this will remain for ever in the future. For me, the photograph in Milan 2005, and the photograph in Katowice at the 10 years of the Foundation of SOSORT, will always be deep in my heart. Wearing the SOSORT symbol on my jacket is not only an honor: it is a pride.
I really feel of SOSORT like one of my children.
Manuel Rigo
I personally think that the SOSORT is still relatively young, slowly reaching maturity. As a young society, still in the enthusiastic and optimistic phase of showing what a good thing we can offer to people with scoliosis. I think it is the time to realize that not all what we do, trying to manage a ‘deviated spine’, with the best of the intentions and even based on some evidence, is always good for the people. One of the first SOSORT consensus was about what we look for when treating people with scoliosis is improving Quality of Life. I hope SOSORT will be able to continue working on this direction and not in the direction of members fighting about who is able to get a straighter spine. On the other hand, what I miss and hope SOSORT will be able to do during the next 10 years, is to attract people working in the field of rehabilitation of secondary spinal deformities, like neuromuscular scoliosis and others. SOSORT has been focussed mainly in AIS, eventually in kyphosis and increasingly in Adult Scoliosis and EOS, but non-surgical management of secondary scoliosis is under-represented in the SOSORT. I hope and I would like that SOSORT become the Reference Society for the Rehabilitation and Orthopaedic Management of all type of patients suffering spinal deformities.