Eva is mother of 2 adult kids. Her 22-year old daughter Sarah has SMA II.
She is a long time patient contact person within the DGM e.V. and also supports the Initiative SMA whenever help is needed. Since September 2017, Eva is a participant of the 3rd cohort of the EUPATI Patient Expert Training Course on R & D in medicines (together with Nicole from SMA Switzerland).
On a professional level, she works as a lawyer, supports her husband in the family business and is member of a local housing board.
José-Luis is father of 3 children, one of them is a type-2 SMA boy. Since the diagnosis of his son in 2003 he and his wife María-José (doctor) started to work with other families to promote the biomedical research about SMA. In 2005, he co-founded Fundame, the SMA Spanish association, where currently he is a member of the board. José-Luis has a bachelor in Law, a Ph D in Economics and is a chartered auditor. He has worked as banking supervisor, CFO and consultant in the banking sector, and external advisor for the IMF.
Lise is a mother of four children, one of whom has SMA II. In 2018, she was elected to the Board of Representatives of the Danish patient organisation for neuromuscular diseases, Muskelsvindfonden. Through her voluntary work in the organisation, she seeks to improve the everyday lives of children and adults with NMD. She is also a member of one of several parent groups within Muskelsvindfonden in relation to which she organises various activities for families of children with NMD. Professionally, Lise holds a master’s degree in English and a BSc in mathematics and works as an upper secondary school teacher.
Václav Hradilek is a Hydrologist and assistant at the Czech Live Science University and Head of the Czech SMA Patient Organisation, SMÁci.
He lives with his family in the Prague suburbs and his daughter, Božena, has SMA Type I.
Simon grew up in India and the UK and is a British and Swiss national. He has held various international senior management and board positions in the airline and IT industry, and is currently Executive Advisor to the Management of a German multinational corporation. His hobbies are jogging, reading and music.
Simon has a daughter, Sandra, born 1981 with SMA type III. Sandra has studied Social work at the University of Applied Sciences and is a social worker at the Swiss Muscular Dystrophy Society.
Besides his primary role of working on projects and representing the philosophy within SMA Europe, he will actively support Nicole in her overall objectives with the coordination of SMA Switzerland and SMA Europe.
Olivera Jovovic is a graduate economist, one of the founders of the SMA Serbia association. She is a mother of two children. Her youngest one, Matija, has spinal muscular atrophy, type 2. Olivera was chosen to be the president of the association. She works hard to ensure that all patients with SMA, children and adults, get treatment. Her effort is best represented in everything she did for the most vulerable patients. Through her devotion, she improved the condition of medical care in Serbia, especially in order to ensure that all patients receive the equipment they need. Working with adult SMA patients, she brought the most famous pharmaceutical company, Biogen, to our country, and together with association members, managed to acquire Spinraza™ for 17 children, including her son. This didn’t stop her, so with willingness and perseverance, cooperatively with the association and doctors, she succeeded in involving eight patients in Roche’s experimental drug study. She also succeeded in arranging a meeting with the Serbian President and the Minister of health. Olivera’s ultimate goal is to get a cure for all SMA patients in our country, with a special awareness on adults, which are rarely centre of attention.
My only child has SMA type II – borderline type III. My vision of SMA research as an ex-scientist and molecular biologist is that the future is indeed bright for the newly diagnosed; and there is an obvious need for much more research in basic science in order to give the post symptomatic patients a better chance of recovery. One can play a role in helping efforts to find a cure for SMA and improve the standard of care which matters most in the absence of a cure. Hassan is a Trustee of SMA Support UK.
Casimir is the father of a boy affected by SMA. He co-founded The SMA Trust in the UK with his father and 2 others. Together with Inge Schwersenz and Domenico, he also founded SMA Europe in 2006. Casimir works in the sports media industry and is Director of a number of companies.
Ria, amongst other things, coordinates diagnostical bound groups, is project leader for SMA, Pompe Disease and Duchenne Muscular Dystrophy. In addition, Ria is a founder, board member and adviser on the International Pompe Association, a former FSHD board member and a Founder of FSHD Europe. Previously, Ria was an ENMC board member and president.
Ria has been involved in the inception of TREAT-NMD and in the work packages of the EU project, as well as in the East Europe adoption project. Her project was, amongst others, directed to Bulgaria. She organised training sessions and conferences in Eastern Europe, all dedicated to neuromuscular diseases, in particular SMA and Duchenne.
She has experience in drug development from the first development to availabilty (Pompe). She went through all stages and had to deal with a lot of problems like supply issues, reimbursement issues, negative press, small or broad label, start stop criteria etc. At the moment she is involved in the second step of drug development, the so called second generation drugs. Ria has coordinated the process, the strategy and contacts needed from a patient organisation point of view, to get the drug to patients in the Netherlands.