Christian Cottet is Chief Executive Officer of AFM. He is the father of a 25-year-old girl with SMA and has been involved in AFM activities for 22 years, first as a volunteer and now as CEO. In 1987 he launched the SMA patient group within AFM along with other parents, and he regularly participates in the GRAM, a French working group including patient representatives, scientists and physicians to accelerate translational research to find a cure for SMA. He represented AFM in the creation of SMA Europe. After 19 years as a volunteer in AFM he left his vice-presidential mandate to become CEO of AFM. Today he is involved in all AFM activities, not only for SMA but for all its neuromuscular and rare disease activities.
Inge Schwersenz has a son with Spinal Muscular Atrophy and wants to make sure that patients in clinical trials are not exposed to any harm and their confidential data are truly protected. On the other hand, she wants to make sure that there are no unreasonable delays in promising clinical trials and finally market authorisation (regulatory agencies, approval in the single countries and reimbursement from the health insurances). Another motivation is to see standards of care applied in every country. Inge is a member of the RD Patient and Ethics Council (RD-PEC) and a member of the DITA Taskforce (Drug Information, Transparency and Access) at Eurordis.
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.
Véronique Van Assche has a Master’s Degree in biology and economics. She was born in 1977 in Brussels and she is affected by SMA type III. She lives in Belgium and is involved with SMA Belgium, the Belgian Association against SMA. She is also lobbies to find solutions to offer a good quality of life for people that are affected by this disease. In her professional life, she works for Wallonia Public Service as a Political Expert in Economics, Employment and Research. She is also interested in rare diseases and European issues.
Yasemin Erbas has a son with SMA type 1. She is a patient representative for the Belgian-Flemish NMD association Spierziekten Vlaanderen, and one of the founders of SMA Belgium. She holds a PhD in Psychology and works as a researcher at the KU Leuven in Belgium.
At national level, she tries to raise awareness for and emphasises the importance of including the patients’ perspective in decision making. Within SMA Europe, she conducts patient-centred research together with Nicole Gusset in order to empirically support our advocacy work.
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.