MEETers run for IMP
RUN AGAINST PAIN, RUN FOR INTERNATIONAL MITO PATIENTS!
Patients with mitochondrial diseases suffer: headaches, neuropathic pain, abdominal pain, muscle pain and aches. Indeed, kids and adults with mitochondrial disorders endure various types of torments and in many cases no obvious cause for pain can be found and those patients frequently feel much worse than they look. That a look at the youtube clip: https://www.youtube.com/watch?v=YSumiPH5EjA&feature=youtu.be
It is all the more regrettable that we sadly record a lack of general awareness about these diseases. Until relatively recently, mitochondrial disorders were considered obscure, exceptionally rare diseases, but they actually are amongst the most common inherited human diseases.
We are 14 young researchers involved in the ITN MARIE CURIE Project “Mitochondrial European Educational Training” funded by European Commission within the frame of FP7 and affiliated to 9 world-leading basic science and clinical centers of excellence. We are working on the emerging mitochondrial medicine field and we really want to attract your attention on mitochondrial diseases! Besides several other activities, we will leave our laboratories to run the 21km of the Great North Run on Sunday 13th of September. Through our run we will launch a fundraising campaign addressed to the International Mito Patients (IMP) association. We will donate to IMP money collected in order to help the association to develop a standard therapy for dealing with muscular pain in mitochondrial diseases.
What about Mitochondrial Disease?
Mitochondrial disease is a collective term for a group of disorders that particularly affect the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems. It is a complex group of disorders, with many different symptoms and many different causes within the mitochondria.
Our body is made up of many different tissues, for example muscles, nerves, and livers. Each tissue is composed of small 'building blocks', called cells, and within each cell there are small objects known as mitochondria. The job of these mitochondria is to produce energy. Just like a power generator, they take in fuel (the food we eat) and burn it up to generate energy. If this process fails, the cell cannot function adequately and this can lead to disease. Disease of mitochondria appears to cause the most damage to those parts of the body which need a lot of energy: brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection. If the process of cell injury is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised.
What are the funds for
International Mito Patients is a network of national organizations dedicated to mitochondrial patients. The national patient organizations which are members of IMP are active and powerful in their own countries. By joining forces, IMP can represent a large group of patients and being their representative at international level (http://www.mitopatients.org/).
At present, IMP is working on raising funds to develop a standard therapy for dealing with muscular pain in mitochondrial disease. Indeed, it does not exist a standard protocol to deal with muscular pains in mitochondrial patients. As a result, mitochondrial patients receive treatment/therapy as the clinicians and therapists see fit, which may differ per country and per clinical approach.
Who we are:
The Mitochondrial European Educational Training (MEET) Project, funded within the frame of the FP7 PEOPLE MARIE CURIE ITN, is a multi-partners project with partners from 8 different countries. Among them, 8 world-leading basic science and clinical centres of excellence, 2 private industries named Khondrion and Seahorse, with direct interest in mitochondrial medicine, and 2 private industries that are INNOVA S.p.A and Ceub Centro Residenziale Universitario di Bertinoro that provide for all trainees the most fertile training environment possible.
We come from all over Europe and we all work now in a laboratory different from our country of origin. Our MEET project is indeed a multi-partner project that intends to mobilize the critical mass of expertise in the field of mitochondrial medicine, by linking partners from 8 different countries. The objective of this project is to produce the next generation of scientist who will lead the field of the rapidly emerging branch of mitochondrial medicine.
MEET goal is to create an ideal platform for the training of young investigators who develop a broad view of biomedical sciences working in such a multifaceted area of research and training inputs. MEET is coordinated by the Department of Medical and Surgical Sciences, University of Bologna, started on January 13, 2013 and will be carried out over a period of 4 years. The project coordination team is composed by: Dr. Giuseppe Gasparre (Associate Professor Medical Genetics Unit), Paterlini Serena (Proposals writer and project manager) Giulia Girolimetti ( Dissemination Assistant)
MEET objectives are:
- to educate a young generation of scientist in the appreciation and dissection of the multifaceted aspects of mitochondrial medicine, through the organization of four integrated Work Packages divided into Tasks;
- to implement up-to-date and innovative technologies and integrated methodologies in the field of mitochondrial physiopathology to dissect disease mechanisms and generate animal models;
- to develop career pathways in order to fill in the current need for researchers with an all-round knowledge of both biological, clinical and managerial issues related to the rapidly emerging branch of mitochondrial medicine.
