Welcome to the Meet Newsletter!
We want to thank you for your support and great participation in the MEET Symposium “From bench to bedside, and back: Patients MEET Researchers” held in Nijmegen on January 29-30, 2016.
The Consortium is very proud of the Symposium organization by the MEETers. Outstanding work!
The importance of communication among patients, researchers and clinicians and the importance of patients' direct participation in research
The overall goal of the MEET Symposium 2016 was to create a bidirectional communication: from patients to researchers and vice versa with the crucial intermediate role of clinicians. Patients, clinicians and researchers are three very different parties dealing with completely different aspects of the same reality. They have completely different roles, they approach the problem with very different angles, they suffer completely different consequences, they have different expectations… but their attention is focused on the exact same need: having a cure for mitochondrial diseases. This symposium was a first attempt to make the MEET researchers carefully closer to the patients, slowly make them know each other, creating bridges among them, starting a genuine direct communication. The ambition was that the MEETers could learn from the patients and vice versa, the way was to bring researchers out from their labs and to put patients into the labs. The crucial intermediation of senior clinicians was necessary to balance optimistic expectations and realistic progresses. Dealing with a rare disease is not an easy thing and mitochondrial diseases do not escape this statement. Patients, clinicians and researchers have to face a multitude of difficulties and we do believe that implementing a good communication between these three different parties is crucial in the fight against mitochondrial diseases. In fact, the burden of some symptoms, for example, or many other concerns might appear crucial for clinicians and researchers but might not be the most important ones for the patients themselves. Communication, close interaction, collaboration and mutual support between research, diagnostic and daily care facilities with patients and patients’ organizations have already allowed the establishment of leading fully-dedicated centres in mitochondrial diseases all around the world. The MEET project is clearly pushing forward in this direction fostering these crucial exchanges. The MEET project clearly arises from such a state of mind and puts a lot of effort into the training of the MEET fellows, the future generation of mito-scientists. The success of this symposium is a proof of evidence that our MEETers have not only fully assimilated these concepts, but have worked hard and with marvel motivation for their realizations. We have been thrilled to welcome to Nijmegen more than 150 participants, with almost 50 patients and patients’ relatives, from 15 different countries, to attend a symposium which turned out to be a remarkable first in Europe.
Professor Dr. Jan Smeitink, Symposium Host Organizer
Head of the Department of Metabolic Disorders and founding chairman of the Nijmegen Centre for Mitochondrial Disorders/Radboud Center for Mitochondrial Medicine and MEET Consortium Memeber.
It was lovely meeting the researchers, other patients and parents of children with mitochondrial disease at the MEET symposium in Nijmegen in January. There was a lot of science presented, within the hope for possible treatments. If we compare the research and the possibility of a quick diagnosis with the genome sequencing now and 10 years ago, we can see that progress was made. Still, there is not any approved medication for mitochondrial disease, so that makes us sad, although the science has advanced so much. But, here we are, the patients, standing, raising our voice, connecting with others like us, supporting and funding research, contributing with all we can in finding a cure for these terrible diseases. We need more of such meetings like this one in Holland, to continue the fight, to continue understanding the physiological and pathological reactions in the body when the mitochondria are prevented from producing the energy that we need for life, to keep close contact with our physicians and researchers so that they can have a more objective picture of how the disease impacts and changes our lives, how we all can help each other. Keep up the good work good people, continue helping us in this fight, organize more such meetings, we will come!
My name is Jasna Berger and I am a Mito patient. I am very happy to have attended the MEET Symposium. It was the first time for me to attend such a Symposium and to meet researchers and other patients. With great interest, I followed all presentations – although some of them were very scientific – and I was impressed about the medical advances made in the mitochondrial field. Especially the contribution about Drug Development for Mitochondrial Disorders captured my interest and gave me hope for the improvement of my own condition. I also enjoyed talking to other patients and parents respectively, and seeing how they cope with the disease and greatly manage their everyday life. Not to forget the young and highly motivated students, their engagement was very impressive to me.
Finally, I´d like to point out that I found the idea itself – to put together researchers, clinicians and patients – very brilliant! Thank you one more time for the inspiring and encouraging time and for the fellowship awarded.
When I received the MEET Symposium information, I was thrilled to see the rare initiative towards a platform that could bring closer a huge and chronic gap between researchers, clinicians and patients. Although I am a patient, I am also a researcher, as more and more patients become, out of genuine curiosity and a tremendous need to understand; although 'understanding' disease is much more complex than pure cellular biology, physiology and pathology. As a matter of fact 'pathology' derives from Greek path- + -logy which means: study of emotions.
Being a new experience for most of us, I did not have any prior expectations for the event. I came open to listen, to receive, to offer, mainly to observe, and to connect. I spent most of my time observing relationships among researchers, clinicians and patients, and I realized that it was a challenging process for all of us. Especially, for me, due to past personal doctor-patient experiences, crystallized defense mechanisms from centuries of being raised in a Cartesian body-mind separation, and a fear of becoming too involved emotionally/personally - although the 'personal story' was what was being offered in relation to traditional research symposia. Sometimes, I also observed the researchers/clinicians difficulty of finding simplified ways to communicate research to the general public/patients, and being carried away with 'their' research instead of making sure we understand and connect. I find that the offer of creative hands-on workshops mingling all participants would be very helpful (in a future attempt).
Everybody tried to connect, and given the difficulty of anything new and innovative, it worked very well. We should remember that this Symposium was a very important step to bridging unnecessary gaps that divide the pathology from its manifestation and lived experience, in a rounder, humanistic way. Moreover, this is crucial!
I need to be in contact with the human side of medicine that no computer can ever touch. I am more than several genes together, I am not pathology but I contain it. In addition, as most of patients, I am keen in working all together (clinicians, researchers and patients) for understanding disease deeper and for discovering ways to deal with it, ways to heal part of it, ways to accept what it is.
Thank you for the opportunity!
All Patients and Patients’ Parents that attended the Symposium had been awarded with a MEET full fellowship.
Please check on the MEET website the new video-interview to Ann and Margaret Kennedy, two Irish mito-patient sisters, fighting and asking for human rights respect.
The video contains an introductory message from the International Mito-Patients Network Chairman, Elja van der Veer. Let’s share it! Watch it here.
Semi-Marathon de Paris (Paris - March 6, 2016): done!
Madames et Messieurs,
the MEET Team took part at the Semi-Paris Marathon! 14 runners ran with a MEET T-shirt for supporting IMP and Mito-patients!
Here below some pictures from Paris. Thank you guys for your support, help and perseverance!
But, after Paris, we will keep on running…
RUN with us, visit KAPIPAL crowdfunding platform, and DONATE, you will receive the MEET technical T-shirt for running with us and for helping IMP to develop a standard therapy to deal with muscular pain in mitochondrial diseases.
Click here to contribute and to support our campaign!
A special thank you to the MEET team runners!
Marco Di Benedetto
Umut Cagin’s MEET contract expired on September 30, 2015. We want to thank him for having been so proactive and engaged in the project development.
“Life is not easy for any of us. But what of that? We must have perseverance and above all confidence in ourselves. We must believe that we are gifted for something, and that this thing, at whatever cost, must be attained.” Madame Marie Curie
Thank you Umut.
The MEET Coordination Team
Umut Cagin interviews himself :
an unusual "double interview"
Why did you decide to work with mitochondria?
Mitochondria are the organelles responsible for energy production among their other very important roles in the cell such as being involved in apoptosis and calcium signaling. This puts ‘Mitochondria’ at the very center of many processes in the cell. This also makes mitochondrial disorders a complex group of diseases on which much more research has to be done urgently. With ITN-MEET, we are able to understand these diseases better and contribute with our studies.
So, why ITN-MEET?
MEET Consortium is composed by the best laboratories working on mitochondria in Europe. The highly interactive and “mobile” nature of ITN-MEET also allowed us to learn different approaches in order to answer scientific and clinical questions. The training that I gained will help me to solve complex scientific questions and to apply my knowledge into those situations.
Where did you spend your past two years?
I worked as ER (Experienced Researcher) at the Spanish National Centre for Cardiovascular Research (CNIC) under the supervision of Prof. Jose Antonio Enriquez. I have also spent a month working in Milan with Dr. Valeria Tiranti, from BESTA Institute (Italy).
How can you define your experience with ITN-MEET with simple words?
Motivating, Exciting, Amazing, Demanding.
I am still working in the same laboratory in Madrid. I am excited with the project that I am carrying out at the moment. ITN-MEET really made me ask more questions about mitochondrial diseases and I am aiming to answer those questions one-by-one throughout my career.
I believe we should all unite and be collaborative in order to find novel treatments for mitochondrial diseases. ITN-MEET was one way of connecting researchers and clinicians working to understand mitochondrial diseases. Now, we should keep our contacts and strengthen them for the future. Last but not least, MEET IS AWESOME!
News from the Consortium
MEET on MITOEAGLE
The MEET Project has been mentioned by the MITOEAGLE Project! The MITOEAGLE network objective is to improve knowledge on mitochondrial function in health and disease related to Evolution, Age, Gender, Lifestyle and Environment.
For further info visit the specific website.
The MEET Consortium is very glad to inform you that European Commission launched an initiative called “Science4Refugees”, a very philanthropic project for helping refugee scientists and researchers to find suitable jobs that both improve their own situation and put their skills and experience to good use in Europe’s research system.
MEET is proud to support this very important initiative!
For further info visit here.
NEW SPEAKER OF THE ASSEMBLY OF TRAINEES!
We are really glad to announce that Eliška Holzerová
(Neuherberg, ESR8) has been elected as Speaker of the Assembly of Trainees for the next six months.
The MEET Coordination Team
WHO IS WHO
Alma Mater Studiorum, Università di Bologna - UNIBO
Dipartimento Scienze Mediche e Chirurgiche (DIMEC)
Coordinator: Giuseppe Gasparre
Dipartimento Farmacia e Biotecnologie (FABIT)
Supervisors: Anna Maria Porcelli - Michela Rugolo
Dipartimento Scienze Biomediche e Neuromotorie (DIBINEM)
Supervisor: Valerio Carelli
Gemeinnutzige Salzburger Landeskliniken Betriebsgesellschaft - SALK
Supervisors: Barbara Kofler - Johannes A. Mayr