The first organization of persons with muscular dystrophy in our region, the Muscular Dystrophy Society of Yugoslavia (UDJ), was formed in 1966 in the health center in Fojnica near Sarajevo, when a group of young people suffering from muscular dystrophy faced with questions of existential importance concluded that the establishment of an association was the only way of action to enforce their rights.
This federal organization operated until 31 June 1991, and after the breakup of Yugoslavia, the republican organizations continued their work independently.
Soon after the establishment of the Muscular Dystrophy Society of Yugoslavia, the necessity to organize operation also by republics turned obvious, because part of the relevant legal regulations was passed at republican level. In December 1968, the first republican organization was founded – the Muscular Dystrophy Society of Serbia.
The Muscular Dystrophy Society of Serbia evolved into the Association of Muscular Dystrophy Societies of Serbia (1973-1995), and in 1995 the Association underwent new transformation and then became the Muscular Dystrophy Association of Serbia.
Through various forms of action, the Muscular Dystrophy Association of Serbia has been changing public opinion for years, raising awareness that disability is not an obstacle, but that obstacles come from an environment that does not provide equal opportunities for personal development and action.
Today, the Muscular Dystrophy Association of Serbia brings together twenty-one city, district and provincial organizations, and the office of the president of the Association is discharged by Dusan Trojanovic.
Association’s scope of activity includes social, health and educational program, representation and regular support activities for organizations and members, PWD social skills preservation and development programs, active participation in the adoption of applicable legislation, solving problems of the most vulnerable members, programs that contribute to raising community awareness such as promotional campaigns, forums and round tables addressing current and important topics, education, etc.
The Association also organizes sports and recreational activities, traditional events, activities that contribute to the inclusion of people with disabilities, information-providing and publishing activities, but also innovative activities designed to increase the visibility of people with muscular dystrophy.
Observance of important dates is very important for promoting and increasing the visibility of people with muscular dystrophy, and for this reason the Association organizes and takes part in three events: Muscular Dystrophy Awareness Week, the World Duchenne Awareness Day and the International Day of Persons with Disabilities.
Special attention is paid to children and young people with muscular dystrophy through the organization of various activities that contribute to the improvement of the quality of their lives and their more successful integration, and one of the most important programs is the Children’s Camp, organized with the support of the Ministry of Labour, Employment, Veteran and Social Affairs, Department for the protection of persons with disabilities, in which children and young people from all over Serbia participate.
Equally important for improving the quality of life of people with muscular dystrophy is the organization of traditional sports-recreational and cultural activities, also implemented with the support of the relevant Ministry and Department for the Protection of Persons with Disabilities, which include members from all over Serbia, such as the national chess championship for people with muscular dystrophy, sports and recreational games, the Creativity Fair.
Creative activities enable members with artististic affinitities from all organizations to express their creative potential, which contributes to inclusion and integration, raising activism and independence, especially of young people with disabilities, by developing their educational and creative potential. Once a year the Association traditionally organizes the central event “Creativity Fair”, which includes an exhibition of works from the Association’s art and creative workshops (of members suffering from muscular dystrophy and related neuromuscular diseases) and a personal presentation of the authors.
GORDANA RAJKOV
As a person suffering from muscular dystrophy, Gordana Rajkov was one of the founders of the Muscular Dystrophy Society of Yugoslavia in 1966 and the Muscular Dystrophy Society of Serbia in 1968. For more than 25 years, she headed the muscular dystrophy society of Yugoslavia, was a member of the Executive Board of the muscular dystrophy society of Serbia, and worked on defining and implementation of the goals of both organizations, on raising people’s awareness of the position and needs of people suffering from muscular dystrophy and related neuromuscular diseases, as well as on support to and improvement of diagnostics and treatment of these diseases in Serbia and the former Yugoslavia. She made a great contribution to the development of the organization related to the adoption of important legal regulations in favor of the members, changing the approach to persons with NMD in many areas. As a delegate of the Muscular dystrophy society of Serbia in the federal organization, she established connections and developed cooperation with other muscular dystrophy organizations of the former Yugoslavia, which enabled the exchange of experiences and contributed to the improvement of persons with NMD care. At the same time, she participated in the founding of some of the local muscular dystrophy organizations in Serbia and supported their work. She was the editor-in-chief of the “Myopathy and Me” magazine, the first one that specifically dealt with the issues of people with muscular dystrophy, the president of the Coordination Board of Disability Organizations of Yugoslavia, then the representative of Serbia in EAMDI. She worked in the Muscular Dystrophy Association of Ireland and the newly founded Center for Independent Living Ireland, and that experience contributed to her initiative to establish Center for Independent Living of Serbia, upon her return to Serbia.
She was engaged in the British humanitarian organization “Oxfam” with the help of which she launched several projects for people with disabilities. She led numerous projects of importance for people with disabilities, organized and led over 700 trainings for different groups of participants and was the author or co-author of several published studies and researches.
For her work, especially related to the organization of persons with muscular dystrophy, she received many awards, including the Order of Labor with a Silver Wreath, the Order of Merit for the People with Silver Rays, a plaque and charter of the Muscular Dystrophy Association of Yugoslavia and Serbia, Bosnia and Herzegovina, Slovenia, the Association of Paraplegics of Serbia, local organizations from across Serbia, the crystal plaque of the Center for Independent Living Ireland, and the US Embassy nominated her for the International Women of Courage Award presented by the US Government.
In June 2015, the documentary film Semper spero (I always hope) was made based on the photo and video documentation of the former Muscular Dystrophy Society of Yugoslavia and Muscular Dystrophy Society of Serbia, which talks about the creation of the first organization of people with neuromuscular diseases in SFR Yugoslavia and the leadership role of Gordana Rajkov in these processes.
In November 2016, Gordana Rajkov marked half a century of her active work in the movement of people with disabilities. She is one of the first persons with disabilities engaged in political activity at the highest level and she was the first member of parliament in the Assembly of the Republic of Serbia in the period from 2007 to 2012.
DAMJAN TATIĆ
Damjan Tatic, a member of the Muscular Dystrophy Association of Serbia, participated in the drafting of the Draft Law on Prevention of Discrimination against Persons with Disabilities, the Strategy for Improving the Position of Persons with Disabilities, the Law on Professional Rehabilitation and Employment of Persons with Disabilities, the Law on the Use of Serbian Sign Language, and particularly important is his participation in the UN Ad Hoc Committee which delivered the Convention on the Rights of Persons with Disabilities (from 2004 to 2006), where he competently represented our country. He was also an adviser to the UNDP office in Serbia in respect of the inclusion of persons with disabilities, a rapporteur of the Council of Europe at the Zagreb conference on the implementation of the Council of Europe 2006 – 2015 Action Plan for Persons with Disabilities, and a rapporteur at the annual conference in Strasbourg in 2008, an expert consultant in many international bodies, and he also served as a member of the UN Committee for Monitoring the Implementation of the Convention on the Rights of Persons with Disabilities.
He is one of the founders of the Centre for Independent Living Serbia, where he volunteered as the General Secretary from 1996 to 2007. He was a delegate at EAMDI from 1993 to 2003 and secretary of the Youth Organization at the Muscular Dystrophy Association of the former Yugoslavia.
He is a member of the editorial board of the “Vesnik MD” (MD Herald) journal and the founder of the “Our Serbia” association for the protection of architectural and natural heritage. He is engaged in translation and journalism, and has also authored over 20 published scientific papers, given lectures in many organizations throughout Serbia, as well as at international seminars. He is an associate of the Official Gazette, the Centre for the Advancement of Legal Studies, the Institute for Economic and Social Research, the Military-History Institute, Handicap International, and the European Disability Forum. For the needs of the International Labour Organization, he conducted research on the employment of persons with disabilities in Serbia, and together with researchers from the Netherlands and Germany, compiled the “Study on the Reform of Employment of Persons with Disabilities in Serbia”
Aleksandar Rakic is a member of the Muscular Dystrophy Association of Nis. Gifted and versatile, Aleksandar has a wide range of interests in the field of art and holds two master’s certificates, one for goldwork and the other for icon painting, verifying his professional competence. He practices in many fine art fields, and in painting his favorite techniques are oil on canvas, watercolor and portrait drawing. Also, he is engaged in creating and designing dresses, painting on textiles, scarf and sash painting, making icons, jewelry and various painted wooden souvenirs. Among other things, he won awards and recognition for participating in fashion shows, sports games in table tennis, and at the robotics competition he was awarded two diplomas, medals and a trophy cup.
Andjela Dimitrijevic is a young, multi-talented artist, who was diagnosed with progressive spinal muscular atrophy (SMA) at the age of three. She nurtures love for art from her early childhood and with the same ease uses a brush and writes verses. She is the winner of numerous painting, short film and poetry awards, including prominent award of the Youth Office of the City of Belgrade for the book “Stars of Belgrade 2017” and the award for the book at the fair in Frankfurt.