View complete transcript
[00:00:29] Prof. Francisco Cardoso: Oh, thank you very much, Sara. I'm really pleased and honored to be here talking to you and to people who are listening to our podcast.
[00:00:40] Dr. Sara Schaefer: You are the 14th president of the MDS. Why don't you tell us about all the things that came before.
Let's start at the beginning with the origins of the society, when and how did it form, and who was involved at that time?
[00:00:54] Prof. Francisco Cardoso: That's a very interesting question, Sara, because I suppose that looking [00:01:00] back the most important mark and feature of movement disorder society is to be a welcoming organization of young people. And back in the 1980s, there was a generation of young doctors in different parts of the world who were very excited about movement disorders.
And as a matter of fact, they were the driving forces behind what we understand now is our field. And, the issue is that these young, excited people, They felt clearly that the organizations around at that time, they were good organizations of course but they were not really institutions that would be able to drive some of these initiatives.
So these young, at that time, people, they got together in 1985. [00:02:00] And they created the Movement Disorder Society. So the most important two names of the foundation of our organization, and I guess we can call them founding Fathers, a bit in line with what is described about the foundation of the American Republic are Dr. Stanley Fahn from New York, who is fortunately alive and the late David Marsden from London. But they were not the only ones. There were people who were even younger than them who were playing a very active role in the creation of the society. So we have Joseph Jankovic from Houston, and also Andrew Lees from London and Eduardo Tolosa from Barcelona.
So they had a meeting in one of these international congresses taking place in Europe, and they decided really to found a movement disorder society. And the final name that I would like to highlight, because he's not often recognized as having [00:03:00] been instrumental in the creation of MDS. Is the late Gerald Stern.
I was talking once to Dr. Fahn, and he told me that he a admired and still admirers how Gerald Stern handled the English language. So he asked Gerald really to write the bylaws of MDS because of his language, his skills. So that was how the society was created back in 1985.
[00:03:27] Dr. Sara Schaefer: Alright, so that was the origin story. Can you describe the growth of the MDS over the years and how it got to its current status and what its current status is in terms of membership conferences, educational offerings? Obviously there's been absolutely enormous growth over the past 37 years.
[00:03:51] Prof. Francisco Cardoso: Right, Sara and I echo what you have said. It is a remarkable growth if we consider that this is a sort of [00:04:00] narrow field when we take into account the whole of neurology and even more medicine. This is a very narrow area and is a surprise that we have grown so much. And, and to me the answer for this remarkable growth is very straightforward.
Because we have managed really to keep this as an open, transparent organization and welcoming of young people. And if you allow me to say so, we are one of the best examples of how MDS can really incorporate people who are energetic and have pallet. I still remember when you, Michele Matarazzo and myself, we got together in Hong Kong to develop this idea of a podcast.
So similarly to what has happened to you, it has happened to me. So I have come from really a place outside the main centers here in Brazil where I'm speaking now. So these open and welcoming attitude [00:05:00] explains really the growth of MDS, which is not exclusively based in North America and Western and Europe.
Actually, the majority of our members are from outside this area. So that's in my view what explains the success of MDS and of course, that we have been very diligent in providing high level education in our fields to people from all over the world.
[00:05:27] Dr. Sara Schaefer: Well, thank you for that shout out. That's very flattering. It certainly has grown into quite an animal of an organization. Do you think that you could clarify for our listeners how this organization is actually structured. There are all kinds of committees and subcommittees and tiers of leadership.
Can you go through the current structure for us?
[00:05:50] Prof. Francisco Cardoso: Of course, but just to finish this growth, right now, we have more than 11,000 members at a global level. So this is a really [00:06:00] remarkable number. And when people from outside our field, they look into this data, they get really surprised by that. But one of the risks that we face with this growth is how to keep this organization flexible and not really somehow a stiff place because of all these committees and task force and so on.
So I suppose that for our listeners, the first point that it's important to highlight is that as a result of the growth and as the needs, they vary tremendously dependent on geography. So it was made a decision many years ago to create sections. So we have a Pan American section, which includes the Pan American continent, the European section, the Asia Oceania section, and the most recent one is [00:07:00] the African section.
So this has really made it easier, Sara, for our leadership really to deal with local, features and not to convey this feeling that somehow we are sitting in a big ivory tower. So we really strive to have this local contact. But getting back to the global MDS, so the first tier of leadership are the officers.
So there is a president, president-elect, past president, and secretaries, treasurer, and secretary left, and treasurer left. So this is really the main body responsible for executive decisions, but in fact, the power of MDS resides in the International Executive Committee. So we officers, we basically execute things that receive the permission of the I E C.
And similarly in every section, [00:08:00] so we have a chair, we have a treasurer, secretary, and there is a local executive committee. So those are the branches, but related to the central leadership, we have committees. These committees are responsible for different areas of the functioning of MDS. I would say that probably the most important committee is the education committee because as I was saying in the beginning of our conversation, our main mission is to provide education.
So this is a really large and crucial group of people where they develop educational initiatives and they also review initiatives that come from each of the sections. And then there are many other committees. For instance, there is the bylaws committee, which is responsible for that. There is another one that is very close to my heart, which is the archives, because they have as a mission really to [00:09:00] create a storage of material related to what MDS has done in the past. There are nice interviews and so on. So these are the committees. And if there is a particular issue that deserves attention of our field, the president has the power to create a task force.
One of the most recent ones, just to give you and the listeners one example is the Task Force on Tic Disorders. They are very common as we know. Certainly the most common movement disorders in children, but surprisingly, we really don't know many things about definition and so on.
So we have created this task force. And then there are study groups. They are more loosely affiliated. Let's say that you and I will have an interest in rare movement disorders. This has become really important in our field nowadays, especially because of the growth of genetics and so on.
And then[00:10:00] there is a study group unlike the task forces that they receive a task to be completed over two years. Study groups. They are longstanding group of people. So that's one. And finally, probably the loosest one in terms of affiliation to MDS is the special interest group. Again, let's get to one other example. You and I, we are interested in pediatrics movement disorders, so there is a special interest group bringing together every member of MDS who has that particular interest. So when we renew our membership annually, then we can sign up to one of these special interest groups, and then we'll be receiving communications related to this area that we are interested in.
So that leads me then to another very important point. So any MDS member can ask herself, well, how do I get involved with [00:11:00] a study group or a task force, or something like that? In this particular case, it is not an automatic process. Not that we want to put any barriers to our members, no, but we need to understand clearly if these people who are participating in one of these groups if she or he really is into that particular area. So every time when there is a creation of a task force, then we advertise on our web page. So please apply if you are interested in membership to a given task force. And then the chair of the task force, along with MDS president they will review this application and they will decide if that person fits with what we have in mind.
Something similar happens to the committees. I can speak probably on behalf of our incoming president, Victor Fung. So right now he's in the process [00:12:00] of preparing all the committees. So I suppose that he has already chosen the chairs of the committees. And then again, a similar process, Sara, takes place for recruiting people to be members of each of these committees.
So soon there will be an advertisement on our webpage requesting people to self nominate, to be members of each of these committees. And then Victor, along with other people, they will review these applications and will select them. To conclude this long answer, so we have now in fact out of this 11,000 members we have more than 800 people who are involved in these committees, programs, task force, and so on.
So it's a large army of volunteers and I have to say that we are very thankful and grateful for the generosity of these people because this takes up a lot of time really for [00:13:00] most of them.
[00:13:01] Dr. Sara Schaefer: All right. Well, you anticipated my next question, which is how can members become more involved? I have a related question. We do know that our podcast listenership is more than 14,000 unique people, and you mentioned that there are 11,000 people in the society.
So that there are people listening to our podcast who are not members of the society. Can you talk a little bit about the advantages of being a member and why somebody may want to join who hasn't joined, to date?
[00:13:35] Prof. Francisco Cardoso: Right. So this is a really interesting question and I would like to start saying that we have several different categories of memberships trying really to adjust to the needs and to the means of people. So long time ago, we have decided that people living in certain areas of the world where they may face financial [00:14:00] hardships, they can qualify for free membership.
It's a very easy process. So just access our webpage and then you can fill out this one page application and the process is pretty much automatic, so that's an important, offering. But in terms of the perks and benefits that someone can get out of being an MDS member I would highlight the two most important ones in my view.
One of them is to have access to this huge trove of educational material, which is available on our webpage. So we have this roadmap, which is a very interesting way of navigating these thousands of files that are placed on our web page. So someone types in let's say movement disorder X and I am a beginner.
And then the webpage will come up with a list of material that will match this profile [00:15:00] that the person provides to the program. So it is an incredible amount of high quality content. And recently we renewed the whole structure of the webpage. So this material has been carefully curated, so it is up to date.
So some of the things that were old, they were removed. So access to webpage is certainly one of the most important benefits. And the second one is to have access to our journals. So we have Movement Disorder Journal, which has an impact factor of around 10. It is highly cited and very important publication in our field, which deals mostly nowadays with translation of science. And then, Movement Disorder Journal was doing this journey in terms of becoming more translation of science. Then we decided to create Movement Disorders Clinical Practice, which has the mission [00:16:00] to address needs of clinicians, people who actually handle clinical care. And this is not, of course, restricted to us physicians, medical doctors, but every health professional who is involved with care of movement disorders. We'll find wonderful material which is published on movement disorders clinical practice.
So these are the two most important benefits. But of course there are others. If one decides to go to our International Congress, let's say, so the registration will be lower cost. This also applies to any educational course which is offered by MDS and of course very personal point and final point, Sara, related to that, that It's a way of meeting wonderful people.
If I were not an MDS member, for instance, I would have never been able, probably, and sadly to meet you, for instance. So, yeah, that's fantastic. So I would say [00:17:00] not only colleagues, but really friends from all over the world. And I owe that to MDS. So I find this really wonderful.
[00:17:05] Dr. Sara Schaefer: It is a fabulous community. I will second that.
[00:17:09] Prof. Francisco Cardoso: Thank you.
[00:17:10] Dr. Sara Schaefer: You've talked a little bit about your vision and it's making me understand why you were elected to be the president of the MDS. A vision of inclusivity of expanding beyond sort of a Europe, American Pan-American concentration and engaging young members, and all of those things. Can you talk a little bit more about what your vision is and what the priorities of the society are in the next five years or maybe even thereafter?
[00:17:43] Prof. Francisco Cardoso: Right. Thank you. Thank you very much. You have captured and described very precisely, Sara, my attitude and vision of the field. Of course, that our foundation is science and we do not want to neglect our [00:18:00] basic scientists, translational scientists. And this has been one of the priorities, is really to engage more with scientists.
MDS was created by clinicians, as we have talked a short while ago. But we are very much really interested in nurturing a large community of basic scientists as well. So that's one point science that will be translated into improvement of clinical care, but really the most important priority of MDS, it has always been so. And although I cannot really speak for the future president. But I am pretty much convinced that this will remain. So it is education.
Covid created, of course, a big challenge, especially for Claudia Trenkwalder, who was the president during the two worst years of the pandemic.
But this led us really to somehow revamp. [00:19:00] And reinvent ourselves in terms of how to reach out to a very large community of people who are based in areas where for many reasons, it can be impossible to come, let's say, to our International Congress, which can be challenging for many people.
So now we have this very strong online presence and even with the fortunately, great improvement of Covid, but this has been incorporated into our workings and I can say that for Copenhagen, our next Congress. So we'll be recording all the sessions and they will be made available for free for our members afterwards.
So even those who, for any reason can't go to Denmark, they will have access to the full content of the Congress. So this has been one of the priorities, but my very personal priority is really to insist on clinical care. I have to tell you, Sara, that for many reasons, and I suppose that this is something that applies to highly [00:20:00] developed societies and also to developing countries. Healthcare providers, we face many difficulties, shortage of personnel, difficulties in having access to new treatments, and also this very large load of clinical work. And for those of us who are in academia, to find a balance between scientific output and providing care is a challenge.
So, I really have elected and I said that when I took over during my presidency, that really, to me the most important priorities that movement disorder society should reflect on how to improve access to care at a global level. And in doing that, the final comment, we are gradually engaging with the patients, community as well. MDS has been almost exclusively a professional organization, but we are now in the process of [00:21:00] creating a really formal forum to interact with patients at a global level as well.
[00:21:06] Dr. Sara Schaefer: That sounds very interesting. I look forward to what is gonna become of that. Well, thank you for taking your time this morning to speak to me and I look forward to seeing you in Copenhagen.
[00:21:19] Prof. Francisco Cardoso: Well, Sara, I am the one really who have to thank you for having invited me and posing these very interesting questions that hopefully helped our listeners to have an understanding of what we all MDS members are doing over these past years. So thank you so much. [00:22:00]