Executive committee (EC) members

Arabela Acălinei is President of Neuro Move CMT Association in Romania, a national organization dedicated to people suffering with Charcot-Marie-Tooth disease and other neuromuscular conditions.

Arabela is a Romanian-English teacher, a translator, as well as an adults’ trainer. She has a degree in Project management, but also in Career Counselling for people with disabilities.

As being a patient with CMT herself and having 12 persons in her family with the same disease, her two sons included, she dedicated her life in becoming an experienced patient advocate and started working with several relevant stakeholders, both at national and international level.

In 2019 she graduated Eurordis Winter School on Scientific Innovation and Translational Research and in 2022 she graduated Eurordis Summer School on Medicines Research & Development. She became EUPATI fellow in 2021, after five months of intensive training at The European Patients’ Academy on Therapeutic Innovation (EUPATI).

Since June 2020, Arabela has been elected Board member of the European Charcot-Marie-Tooth Federation and Eastern Europe Ambasador for ECMTF. Raising awareness about Charcot-Marie-Tooth, especially in those countries where the disease is less known and patients lack support, is one of Arabela’s ambitions!

Becoming EAMDA President in October 2021, was not only a significant achievement for Arabela Acălinei, but also an opportunity to bring her expertise and support to the large European NMD community, that EAMDA serves.

Dona Jandová has a degree in English and Czech language from the Charles University in Prague. She is married and has one adult son. Since 2003 she has been working for the Czech Muscular Dystrophy Association as the chief editor of theirs magazine and as a coordinator.

In 2011 she was elected as a member of Executive Committee of EAMDA and from 2013 she is also one of its vice presidents. She has a vast experience in the field of nonprofit and patient organizations, where she strives for implementation of multidisciplinary care for persons with neuromuscular diseases in practice. She has established contacts with different international organizations and participated at international conferences and workshops. She has translated a lot of documents and informational materials about neuromuscular diseases into Czech.

She represent EAMDA at EURORDIS which is a unique, non-profit alliance of over 700 rare disease patient organizations from more than 60 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By participating at its conferences, workshops and general assembly she would like to empower neuromuscular disorders patient groups and raise public rare disease awareness on international level.

In her private life she enjoys travelling, reading and staying together with her family.

She would like to promote the patients centered care and raise the awareness of the specific needs of persons with neuromuscular disorders on all levels.

Jana Popova is PhD student and freelance journalist. In 2014, she graduated from the Faculty of Journalism and Mass Communication at the University of Sofia – “St. Kliment Ohridski”. Since 2011 she has been working as freelance journalist for different online media in Bulgaria. In 2016, she started her PhD program at Sofia University in the field of mass communication and book publishing. She is author on different articles about social policies, health system, education and different aspects of the daily life of people with neuromuscular disorders. Her personal interests are in the field of media development and digital communications.

As a patient with neuromuscular disorder, she is active member of the Bulgarian Association for Neuromuscular Diseases. She is involved in different activities, organized by the Bulgarian Association for Neuromuscular Diseases. She supports all Bulgarian patients’ organizations for neuromuscular disorders.

In October 2017, she became member of the EAMDA Executive Committee. She believes that her position as EAMDA EC member is great honor and incredible opportunity to develop the cooperation between different European patients’ organizations for neuromuscular disorders.

At the beginning of 2018 she became a member of the EPF Youth Group. Jana believes that her position as a member of the EPF Youth Group is big honor and it will help to increase the awareness about Neuromuscular Disorders in the society. She thinks that this is great opportunity to enhance the cooperation between different European organizations and to pay more attention on the problems of people with NMD. Jana believes that people with neuromuscular disorders should raise their voices and they should stay united if they want to improve their quality of life.

She is recipient of the EURORDIS Black Pearl Award for Young Patient Advocate in 2020.

Tomislav Goll, computer programmer, graphic designer, journalist and musical editor, is EAMDA Secretary General (European Muscular Dystrophy Association), SDDH Vice president and member of the board (National Neuromuscular Association). He is also Vice president and member of the board of local Association for Neuromuscular disorder, Vice president of City Committee for persons with disability in Slavonski Brod, President of local Theatre – Slavonski Brod, Director and musical editor of Radio92FM community radio in Slavonski Brod, Croatia. With more than 35 years of experience in local community and civil society, Tomislav Goll is not only a member, he is a founder of several associations. In his work he was awarded several times: Winner of prestige Shaklee Award 2004. Highest USA Award for work with children with disabilities, Winner of County award 2006. As person of the year for all humanitarian work in civil society, special care for persons with disability and promotion of credit and fame of Brodsko posavska County in country and international, Winner of third prize WHO (World Heath Organization) photo contents in 2004. Digital photography of Down-syndrome boy – Faster then You, His designee of Poster “Bicycles” win international award in Campaign against women violation in 2001, and for web designee – Winner of prime Minister WEB 2005 award for web portal of Croatian National Neuromuscular Association – highest web award in Croatia. As person with disability with neuromuscular disorder his work was always development of civil society organizations, establishing partnerships among different sectors and promoting public participation in decision making. For example his work on the borders between young disabled people, youth trainers, youth policy and researchers, and continued work on training programs for associations. He served as member of EU-Croatia Joint Consultative Committee from beginning, in period 2006-2011. Tomislav Goll prepared report on following topic: Reform of the Croatian pension system – Focus on disabled person’s pensions. Over the last 10 years he has been intensively involved in European integration, fluent in English and writing English.
With the well-known way of media speech, he has spent the decades on radio program, leaving behind love, longing, envy, and unmerited songs. He built his status for years in the sweat and hard work. Rock’n’roll is his mission, nicknamed ‘The Good Spirit of Rock’n’roll’, by city bands because his constant rock promotion of local music at all media. He has one of the biggest collections of vinyl in this part of Croatian. If he is not in front of the stage then he is on it as the manager…

Ivanka Jovanovic from Serbia is Executive Director of National Organization of Persons with disabilities of Serbia (NOOIS) and an expert associate in Muscular Dystrophy Association of Serbia. She has excellent knowledge of disability policy and human rights advocacy for people with disabilities.

Disability movement activist since the age of 18 when became youth activist within EAMDA’s Youth group of people with Muscular Dystrophy.

Today, she is one of the prominent leaders of the Disability Movement in Serbia with years of experience in the domestic and international disability movement. She has been a member for several years of the Council for disability issues of the Government of the Republic of Serbia, Member of Ethics Committee of Serbia (Government body), member of the Government Council for Monitoring UN Recommendations which is a key national mechanism in Serbia for monitoring ratified UN conventions on human rights and fulfilling the obligations arising from them and member of the Platform of Organizations for Cooperation with United Nations Human Rights Mechanisms.

She has cooperation with the UN from 2013 and especially with the Committee on the Rights of Persons with Disabilities, in the field of monitoring the UN Convention implementation and working on harmonizing Serbian regulations and practices.

Currently very active at international level. She is a member of EAMDA Executive Committee (also, she has been a Vice – president in a few mandate), member in EFNA’s  board (European Federation of Neurological Associations) as EAMDA’s representative and NOOIS representative in EDF (European Disability forum).

She has University level degree from Faculty for political science, University of Belgrade, Degree – Journalist, BA. Informal education: degree for certified trainer in the field of NGO management and human rights, non-discrimination, lobbying and advocacy.

She is the author or co – author of many manuals and researches.

Mojca Sušec graduated at the Faculty of law, University of Ljubljana, Slovenia and earned Bachelor’s degree in 2013. After graduation she gained experiences as a judicial trainee at High Court of Ljubljana. Since 2015 she has been employed full time as development coordinator in disability company Birografika BORI d.o.o.. Her engagements in the company covers different aspects of business law.  Birografika BORI d.o.o. is a printing company founded and owned by Muscular dystrophy association of Slovenia with intent to employ and activate disabled people into working process, as the company has more than 40 years of successful business on the open market.

Mojca has been diagnosed with SMA (Spinal Muscular Atrophy), type 2 and strives to live as active, independent and balanced healthy life as possible. Besides her regular job, she co-founded “Zavod OS” in 2021, an institution for strengthening independent live of people with NMD and their equal opportunities in the framework of which Mojca gives lectures of social security and labor law. She is closely connected with the Muscular Dystrophy Association of Slovenia through her position of a Board member, where she is active for more than 10 years. In the association’s magazine “Revija MAŽ” she periodically publishes articles related to the law field concerning disabled people and their rights. She is also juror of the Labor and social court in Ljubljana and a Member of honorary court of arbitration in The National Council of Disability Organizations of Slovenia, both since 2020. The same year she became a member of Expert council for Gender Equality which is the consultative body of the Ministry of Labour, Family, Social Affairs and Equal Opportunities of Slovenia.

In her spare time she loves to play chess, where she collected 7 gold, 2 silver and 3 bronze medals from the Sports Federation for the Disabled of Slovenia – Slovenian Paralympic Committee (competitions at the national level). She loves old historical city downtowns, castles and wild nature, especially lakes and mountains.  She is active in the working group in project GOGO  –  physically disabled conquer the mountains which is led by Alpine association of Slovenia.  She lives on her own in a flat in Ljubljana, surrounded with the help of personal assistants and is owner of an African pygmy hedgehog.

As an Executive committee member of EAMDA she would like to contribute with her knowledge and experiences to support the community, especially people of NMD.