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Welcome speech







Good afternoon everyone. Dear colleagues, ladies and gentlemen,

As co-organizer of this conference, it is a great pleasure for me, to hold in our city this International Congress about Myotonic Dystrophy,  after the 8 previous editions celebrated in many different cities around the world. Two years ago, Dr Urtizberea and myself took the challenge of hosting this new edition that we hope will be as successful as all of its predecessors.  On behalf of the city of San Sebastian-Donostia, I would like to warmly welcome all of you.


In this year, we commemorate San Sebastian’s almost complete destruction 200 years ago, and the decision of the few survivors to rebuild a new city.  In the summer of 1813, during the Napoleonic Wars, an Anglo-Portuguese army commanded by Sir Arthur Wellesley, Duke of Wellington, confronted the French garrison, which defended the withdrawal of the French army to France.


After a couple of months of siege by land and sea, on August the 31st, a few meters away from here, on the other side of the river, there was a breach in the walls of the city through which the assailants entered. The French troops were locked in the castle until their final surrender eight days later.


Meanwhile, the invading army swept through and completely destroyed the city by fire. These were eight days of slaughter, rape, and looting. The horror of war as the brilliant painter Goya would later show. Among the 622 households, only 35 were left standing. However, a few days after the disaster, a handful of brave survivors made the decision to rebuild the city that today welcomes you with open arms.


San Sebastian is one of the five Basque provincial capitals, perhaps the most Basque of all of them, and in its traditions survive traces of those who have populated it throughout history. For about 150 years, San Sebastian was the summer resort of the Spanish aristocracy and it is known for the charm of its climate, cuisine and nature. In addition, in the last 50 years, San Sebastian has also gained its place in the world of innovation as one of the most innovative and industrialized regions of Europe.


Every year, thousands of European students come to the University of the Basque Country with the Erasmus Program. The city has been named as the European Cultural Capital for 2016. It has also become the home of research and technological innovation centers such as BCBL, Basque Culinary Center, CITA-Alzheimer, INBIOMED, Onkologikoa, Biomagune, TECNALIA or Biodonostia, among others, which support biomedical research and host researchers around the world. They all have decided to come to Donostia to develop their research through the excellent IKERBASQUE program.

I hope that, despite the heavy agenda of the meeting, you will find time to visit the city and lose yourself among its people. Tomorrow in the afternoon, weather forecast is fine, there is programmed a walking visit of the Old Town after scientific session. I'm sure you will want to come back to Donostia.

I cannot conclude this brief speech without giving thanks publicly to the organizing  committee, especially to Tee Ashizawa and Maury Swanson for their constant support, as well as to the various organizations, foundations, companies and institutions which have collaborated in making possible this meeting, which we are about to inaugurate.

Also a heartfelt tribute to Shannon Lord, recently deceased, who was coordinating with Lisa Harvey the Spanish edition of the book Myotonic Dystrophy: The Facts, by Professor Harper. I'm sure Shannon would be pleased with this result of this work, which will be a useful tool for doctors, patients and Spanish-speaking families.


Finally, I want to acknowledge very strongly the presence of the KANTAKIDETZA choir, formed by colleagues and coworkers at Donostia Hospital, and other centers of the Basque Health Service. They have prepared with great care for all of you, under the direction of Professor Juan José Ocón, an interpretation of his own repertoire after the Keynote Lectures and before the cocktail.

Now, before the scientific sessions begin, I would like share with you a short video which, in a few short minutes, will show you the heart of the city.  My personal thanks for coming to San Sebastián to all of you.






My dear Colleagues, Adolfo, Ladies and Gentlemen.


It is our pleasure to welcome you all on behalf of the organizing committee of this ninth meeting of the International Myotonic Dystrophy Consortium.


Adolfo Lopez de Munain, who is actually the main organizer, myself (who contributed very little, I must confess) and the rest of the committee (including Tee Ashizawa and Maury Swanson) are quite glad to see you expressing such an interest in this group of devastating disorders.


We would like to remind you, notably the newcomers to the field, especially the youngest scientists, that this kind of symposium is a bit unsual and unformal in its format and objectives. In rare diseases, and myotonic dystrophy is no exception, there is an absolute necessity to make physicians, scientists and patients organizations interact and work together. That is the only way to move towards therapies.


These IDMC meetings are therefore meant to foster and materialize these collaborations and also to assess what has been achieved over the past two years and beyond.


From that perspective, I must say that I am personally quite impressed. Like many of you, I attended the very first IDMC meeting at the brand-new Institut de Myologie in Paris (1997). That was 16 years back at a time when I was the Medical Director of the French Muscular Dystrophy Association (AFM). I then attended several DM-focused workshops held under the auspices of the European Neuromuscular Center (ENMC) in the Netherlands. Every meeeting has always been a real source of inspiration and a unique opportunity to promote cross-ferlitization.


We feel very confident the same spirit will prevail over the next 3 days in San Sebastian. You will certainly be impressed by the amount of new findings that are going to be disclosed either in plenary or in poster sessions. Science moves fast and that is very encouraging. Although therapies remain still on the horizon, we/you have already done a great leap forward.


You may now wonder why San Sebastian has been choosen to host this ninth IDMC meeting. I see three reasons for that.

First is that the Basque Country, as a whole, pays a high tribute to Myotonic Dystrophy. We have notably in the Guipuzkoa province, but also on the French side of the Basque Country where I am based, one the highest prevalences of DM in the world. Our patients and ourselves are therefore very committed to share our burden with others and help find solutions.


Second, because Adolfo’s group in San Sebastian and mine in Hendaye have a longstanding cross-border collaboration that exemplifies the concept not only of translanational but of transnational team working.


Third, and this is on a more personal note, because like Martin Luther King, I have had a dream a long time ago. The dream was to organize a major international event in myology in the Basque Country itself. Thanks to you all, this is becoming reality. The truth is that for years, people have been either reluctant or afraid to come over here. Hopefully, and thanks to the peace process which is now on the right track, this is no longer true. I am therefore sure there will be other meetings of such kind in the near future.


Once again, ‘welcome’ to you all for coming. As we say over here in the Basque native language (euskera) ‘ONGI ETORRI’ !!.














Welcome to the 9th International Myotonic Dystrophy Consortium (IDMC-9) Meeting which will be held in San Sebastián, Basque Country, Spain in October 2013. The IDMC is an informal group of clinicians and research scientists who have a common interest in understanding the clinical and molecular events leading to the neuromuscular disease myotonic dystrophy and to develop effective therapeutic strategies for this disease.

The IDMC-9 meeting will be a great opportunity to provide a forum for the latest scientific developments on the disease with a special emphasis in Pathogenesis and Treatments. We are living a challenging time for the myotonic dystrophy research around the world. Thus, we are confident that 2013, declared in Spain as the Year for Rare Diseases, will contribute to launch this international event, and hopefully will be remembered as a special milestone in the battle against myotonic dystrophy.

Looking forward for seeing you in San Sebastian in 2013.

Yours sincerely,


Co-Chairmen, IDMC-9 Organizing Committee



        Adolfo López de Munain





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Attendance and Contribution Certificates, Book of Abstracts and Survey available in your Private Area

"Distrofia Miotónica"

Peter S. HARPER (versión española)

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MDA Muscular Dystrophy Association

Gipuzkoako Foru AldundiaDonostia Tourism


IDMC-9. International Myotonic Dystrophy Consortium

16 to 19 October 2013
Kursaal Conference Center Map
San Sebastián - Basque Country - Spain

Organized by:
BioDonostia and Ilundain

Technical Secretariat


Lankor - Conferences and Events
Parque Empresarial Zuatzu
Edificio Zurriola planta baja local 5
20018 Donostia - San Sebastián

Tel: +34 943 42 81 11

Fax: +34 943 428 055


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