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The Muscular Dystrophy Association (MDA) of Slovenia was established in 1969. It is an interest union of persons with progressive neuromuscular disorders (NMD) as well as their parents, physicians and other supporters. Since Slovenia is a relatively small country with a population of only two million, the Muscular Dystrophy Association of Slovenia also represents persons with ALS. This enables us to unify our efforts in achieving the desired programmes and goals such as reliable diagnosis, new treatment methods, preservation of general health and resolving the problems caused by severe disability that sooner or later leads to permanent dependence on personal assistance and technical aids. In 2002 persons with ALS and their relatives and physicians held the first joint meeting where they set up the ALS Committee within the Muscular Dystrophy Association of Slovenia.
The ALS Center Ljubljana was established in 2002 at the Institute of Clinical Neurophysiology, University Medical Centre Ljubljana. The multidisciplinary team offers clinical care for most of the Slovenian patients with ALS. The main research interests include neurophysiology and neuroimaging of ALS. The Ljubljana Institute of Clinical Neurophysiology (ICN) was formally, as a unit on its own, established in 1969, but had been, in the form of a neurophysiology laboratory at other departments, in fact active already more than 10 years earlier. At that time, clinical electrophysiological methods were among the most powerful and prosperous tools in the research of peripheral and central nervous system in humans and were quickly gaining their importance also as routine diagnostic procedures. Both of these aspects as well as clinical neurological programmes constituted and still represent the core of the institute’s functioning.
Boris Šuštaršič was born in June 1945 in Ljubljana. His life has been significantly marked by hereditary progressive neuromuscular disorder which has forced him to use a wheelchair since the age of 11. Despite severe disability he regularly finished primary school and passed the grammar school-leaving examination with the support of his parents. He enrolled the University of Ljubljana to study English and French, but was forced to stop in the second year of study in 1966 due to several reasons. At that time he was appointed chairman of the newly founded Muscular Dystrophy Association of Yugoslavia, and three years later he was also elected president of the Muscular Dystrophy Association of Slovenia.
Since then he has dedicated his professional and private life to organised activities within MDA and to cooperation with other organised groups of disabled people. For many years he has successfully built the system of strong and multi-branch economically viable and humanely optimistic policy of the holistic approach to persons with NMD who should enjoy all the social rights arising from their status as disabled persons. On account of his ability to integrate separate elements into new comprehensive ideas Mr. Šuštaršič was also elected to lead the National Council of Disabled People’s Organisations of Slovenia. In this role he has significantly contributed to the development of cooperation culture between different groups of disabled people. He has been also very innovative in the field of employment of disabled persons and integration of companies employing disabled persons and was therefore elected Chairman of the Alliance of Companies Employing Disabled People of Slovenia (ZIPS).
Mr. Boris Šuštaršič has developed his own way of accepting his disability and has dedicated himself to collecting specific knowledge needed to realise his numerous ideas and turn them into something attainable in the lives of persons with disabilities. Under his leadership the Muscular Dystrophy Association of Slovenia has developed professional articulation of the interests of persons with NMD and their advocacy in the development of health and social protection. As part of those interests MDA has also developed two successful companies employing disabled people: Birografika BORI and Dom dva topola.
Mr. Šuštaršič is an expert in efficient management in the field of protection of persons with disabilities where he unites the theoretical and practical approaches and has been the initiator of numerous social innovations. Mr. Šuštaršič is the author or co-author of many articles, expert papers and essays in the field of disability. Of special importance is his contribution to the preparation of the current national development strategy in the field of disability protection that was adopted by Slovenian Government and Parliament in 1992. The Government appointed him as chairman of the working group for the preparation of that development strategy.
In 1992 he was elected member of the National Council of the Republic of Slovenia for the first time. He was then re-elected to this function in 1997, 2007 and again in 2017 for the fourth term of office. Mr. Šuštaršič advocates the idea of Slovenia as a welfare state within the meaning of Article 2 of the Constitution of the Republic of Slovenia and thus promotes the social policies that ensure support to the socially disadvantaged groups which may be pushed into desperate situation due to market competition. He also advocates the equalisation of opportunities for persons with disabilities and their independent life in line with the Convention on the Rights of Persons with Disabilities.
As recognition for his contribution in the field of social protection Mr. Šuštaršič has received the award of the Ministry of Family, Social Affairs and Equal Opportunities for his outstanding achievements in the field of social protection, as well as the highest state award – the Order of Freedom of the Republic of Slovenia for his merits and personal contribution for the benefit of disabled people of Slovenia. Mr. Šuštaršič has proven with his work and life that active participation of people in resolving their own social problems is the first and foremost principle of successful social protection.
In his scarce free time he likes to watch basketball matches of the Union Olimpija team and the national representative team, and he is also a great film lover and connoisseur.
Mr. Šuštaršič has proven that even the most severely disabled persons can build a successful career and leave a positive impact on their social environment.
Boris Rogelj is associate professor at the Jožef Stefan Institute in Ljubljana, Slovenia. He is a molecular biologist/biochemist researching the molecular processes underlying neurodegenerative diseases. His focus is on the pathological RNA-protein interactions and mechanisms underlying ALS and frontotemporal lobar degeneration (FTD).
Blaž Koritnik is neurologist at the Institute of Clinical Neurophysiology Ljubljana University Medical Centre, Slovenia. The Ljubljana ALS Center was established in 2002 at the Institute of Clinical Neurophysiology. The multidisciplinary team offers clinical care for most of the Slovenian patients with ALS. The main research interests include neurophysiology and neuroimaging of ALS. The centre hosted the ENCALS meeting of 2017.
Dr. Janez Zidar is director of the Ljubljana ALS Center. The Ljubljana ALS Center was established in 2002 at the Institute of Clinical Neurophysiology, University Medical Centre Ljubljana. The multidisciplinary team offers clinical care for most of the Slovenian patients with ALS. The main research interests include neurophysiology and neuroimaging of ALS. The centre hosted the ENCALS meeting of 2017.
Metka Ravnik-Glavač is full professor of biochemistry and molecular biology at Faculty of Medicine University of Ljubljana, Slovenia. She has been researching molecular genetics and epigenetics, including noncoding RNAs and DNA methylation of Slovenian ALS patients.
Fundraising for project MinE Slovenia is performed by the Muscular Dystrophy Association of Slovenia.