JA Urtizberea
J. Andoni Urtizberea, MD, hospital practitioner at the Hospital of Hendaye, co-founded, with Michel Fardeau, the first summer school. It has existed since 1998 and has already trained 350 to 400 students worldwide, with whom contacts are kept. It has created a “community”, within which there are discussions around diagnostic cases and exchanges concerning research progress in specific areas. Former students can also benefit from proposals to come and occupy positions as researchers or medical doctors, according to the needs of different research teams at the Institute of Myology or elsewhere in the myology community.
What are the profiles of the students that you are welcoming this year?
From their training viewpoint, the vast majority are young doctors at the end of their course, mainly interns in neurology, pediatrics and neuropediatrics. As for their geographical distribution, as always, we are giving priority to students from Southern (Spain, Italy) and Eastern (in partnership with the TREAT-NMD network) European countries and of course up-and-coming countries (South American countries, India, China, North Africa). Regarding the student profile, we have remained in general, fairly traditional and true to our original objectives.
Can you remind us about your objectives?
The initial ambitions were to increase the awareness of neuromuscular diseases to people who would have never had the opportunity, because they live in countries where these diseases are largely ignored or because such a curriculum does not exist in their respective countries. It was also a way to offer a less academic Latin equivalent to what has already been established in the Anglo-Saxon world for teaching Myology. Thus we are both competing with and complementary to the London school of myology, which conducts its own training at about the same time as us but in a slightly different format and with a larger number of candidates.
What do you think is the size of the community of myologists?
In a very broad sense of the term, I believe that this represents a few thousand people because we are still in the field of rare or very rare diseases. Gradually, however, we see that each year there is an increased interest in myology, both from young doctors and families and patients' associations from each country… The doctors that we have trained also help to structure the associative network in their own country, which is very encouraging.
Is there a specificity to this edition of the summer school?
This year is a bit special because we decided not to have a waiting list, even though we received many applications. Each year we have been obliged to refuse many candidates due to a lack of space, which was very frustrating, especially for the candidate. We have therefore made a huge effort both logistically and financially to be able to welcome as many people as possible this year. This influx of students could have posed other problems, particularly to keep what makes this school so popular: interactivity and the familial aspect (since we are practically always together during 10 days). However, we can be satisfied from this point of view: Even with 45 candidates (8 more than last year), the level of friendliness and exchange has been maintained throughout the school.
How do you create this atmosphere?
The idea to welcome people from very diverse backgrounds, in terms of geography but also on a personal level -some are strongly involved in neuromuscular diseases, others much less-is always rewarding. The mix with all the staff at the Institute of Myology (administrative, researchers, clinicians and teachers) is also very positive.
The differences in age and culture also help to encourage, for the most curious and more open-minded, exchanges between everyone.
Are you saying that the Institute is the unique place where the summer school takes place?
Unique, especially for the conviviality offered by the layout of the premises and interactions with the teaching and administrative personnel of the Institute. However, we wanted some of our students to visit other popular myology organizations, (Creteil, Maisons-Alfort Veterinary School, Garches hospital, the Cassini laboratory at Cochin). During an afternoon, our students were able to observe how children with neuromuscular diseases are taken care of, or practical problems of muscle or nerve biopsy or gene therapy programs in animals. This practical approach has certainly enabled students to have a broader vision of myology and the experience is undoubtedly to be renewed.
August 2008
Interview by Anne Berthomier, translation by Racquel N. Cooper
From their training viewpoint, the vast majority are young doctors at the end of their course, mainly interns in neurology, pediatrics and neuropediatrics. As for their geographical distribution, as always, we are giving priority to students from Southern (Spain, Italy) and Eastern (in partnership with the TREAT-NMD network) European countries and of course up-and-coming countries (South American countries, India, China, North Africa). Regarding the student profile, we have remained in general, fairly traditional and true to our original objectives.
Can you remind us about your objectives?
The initial ambitions were to increase the awareness of neuromuscular diseases to people who would have never had the opportunity, because they live in countries where these diseases are largely ignored or because such a curriculum does not exist in their respective countries. It was also a way to offer a less academic Latin equivalent to what has already been established in the Anglo-Saxon world for teaching Myology. Thus we are both competing with and complementary to the London school of myology, which conducts its own training at about the same time as us but in a slightly different format and with a larger number of candidates.
What do you think is the size of the community of myologists?
In a very broad sense of the term, I believe that this represents a few thousand people because we are still in the field of rare or very rare diseases. Gradually, however, we see that each year there is an increased interest in myology, both from young doctors and families and patients' associations from each country… The doctors that we have trained also help to structure the associative network in their own country, which is very encouraging.
Is there a specificity to this edition of the summer school?
This year is a bit special because we decided not to have a waiting list, even though we received many applications. Each year we have been obliged to refuse many candidates due to a lack of space, which was very frustrating, especially for the candidate. We have therefore made a huge effort both logistically and financially to be able to welcome as many people as possible this year. This influx of students could have posed other problems, particularly to keep what makes this school so popular: interactivity and the familial aspect (since we are practically always together during 10 days). However, we can be satisfied from this point of view: Even with 45 candidates (8 more than last year), the level of friendliness and exchange has been maintained throughout the school.
How do you create this atmosphere?
The idea to welcome people from very diverse backgrounds, in terms of geography but also on a personal level -some are strongly involved in neuromuscular diseases, others much less-is always rewarding. The mix with all the staff at the Institute of Myology (administrative, researchers, clinicians and teachers) is also very positive.
The differences in age and culture also help to encourage, for the most curious and more open-minded, exchanges between everyone.
Are you saying that the Institute is the unique place where the summer school takes place?
Unique, especially for the conviviality offered by the layout of the premises and interactions with the teaching and administrative personnel of the Institute. However, we wanted some of our students to visit other popular myology organizations, (Creteil, Maisons-Alfort Veterinary School, Garches hospital, the Cassini laboratory at Cochin). During an afternoon, our students were able to observe how children with neuromuscular diseases are taken care of, or practical problems of muscle or nerve biopsy or gene therapy programs in animals. This practical approach has certainly enabled students to have a broader vision of myology and the experience is undoubtedly to be renewed.
August 2008
Interview by Anne Berthomier, translation by Racquel N. Cooper
