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.
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.
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.
Huub has two sons, one of which has been diagnosed with SMA -3. Huub is an entrepreneur and owner of multiple IT companies in the Netherlands focusing on Marketing, Sales and Service solutions. As a volunteer he works for the Vereniging Gehandicapte Wintersporters (Organisation of disabled wintersporters) where he is the organiser of a yearly winter sports trip for 45/50 disabled children and their families. He is the deputy for Ria Broekgaarden.