Board of Directors
President 2017 to date Vice-president 2015 - 2017 Treasurer 2013 - 2016 Secretary, 2011 - 2013 Marina is the Vice President since 2011 of the Italian HSP Association, founded in October 2009. She is the mother of 2 children, one with HSP since the age of 1. She worked in an advertising agency for 15 years and now works part-time at home, working to find the best therapies to help her child grow the best he can. She practices Feldenkrais and studies Spanish.
Vice-president 2017 to date Secretary 2016 - 2017 Member of the Board 2015 - 2016 She joined Euro-HSP as the Dutch delegate in 2014, and in 2015 as a member of the board. Hermien has worked as a nurse for 40 years in many fields of healthcare, seven of those years on a neurological ward. Alongside this, she developed a practice in Complementary Healthcare. Hermien was diagnosed with HSP in 2005. Since then, she´s been a member of the Dutch Neuromuscular Disease Association ("Spierziekten Nederland"). She has been a member of their ALS-HSP-PLS-PSMA diagnostic-specific workgroup since 2012, and has been involved in organizing and chairing group meetings with HSP-ers and PLS-ers. She also does organisational and editorial work for the association`s newsletter, website and yearly congress. Her goal is to improve the quality of life for HSP-ers in every possible way.
Treasurer 2016 to date. He joined Euro-HSP as the Swiss delegate in 2013. Martin is working as a Geriatrician. He was diagnosed with HSP in 2007. Since 2009 he´s been a member of the Swiss self-help group (hsp-selbsthilfegruppe.ch). He likes to walk in the mountains and is interested in rare diseases generally and neurodegenerative diseases and HSP in particular. For him it´s especially important to improve quality of life.
Secretary 2017 - 2018 Member of the Board 2016 - 2017 Secretary, Euro-HSP 2013 - 2016 Treasurer, 2010 - 2013. Ingerid stopped in 2015 as Vice President of the Norwegian association NASPA and is now 1st alternate. She was diagnosed in 2004 but has had the disease since 1995. She works in a bank and sings in a choir, and tries to be active with training and activities.
Scientific Advisor, 2011 - to date. Jean is Ph.D Scientist, Biologist and Researcher in Oncology and has been working in cancer genetics, specifically paediatric cancers; he has published many original studies on neuroblastoma. In 1994, he was diagnosed with HSP - after having 3 children, the gait of his younger daughter enabled neurologists to diagnose HSP, in spite of a lack of any previous familial case being declared in his family. Considered as a de novo mutant he transmitted the disease (juvenile form) to 2 of his 3 children in an autosomal dominant manner. In 1995, he co-founded the French Association Strümpell-Lorrain. Since then, he has been a member of the Board in charge of scientific information on the HSP diseases and was elected Vice-President in 2012. In 2010, he contributed in establishing the European Federation Euro-HSP. He is mainly interested in the genetic and physiotherapeutic aspects of HSP. He writes patient-friendly articles in the French HSP Association gazette, called Spastic, as well as a booklet for HSP-suffering persons dealing with all aspects of the disease. Jean is daily in touch with patients, providing them with scientific and medical advice.
Webmaster 2012 - to date. President, Euro-HSP 2011 - 2017. Vice-president 2010 - 2011. Dorthe is a retired teacher, M.Ed. She was diagnosed with HSP in 2004 and joined the newly established Danish association for ataxia and HSP. She has been a member of the Board since 2007 and was elected Vice-President in 2012 and President in 2014. She has been working for establishing the European Federation of Euro-HSP since 2009 and was elected vice-president in 2010 and president in 2011. She has attended Eurordis Summer School and various conferences in order to be better prepared for the job. She´s a member of CEF (Council of European Federations) and PAC (Patients Advisory Committee).
Mentor 2009 to date. Rob has been working in patient education and training for 25 years. He is most interested in education development from a patient's perspective for patients and their allies. Since 2008, at Eurordis, he has worked on capacity building for people with rare diseases, including building patient federations, clinical trials training and social media. He has worked on gaps in services at Centres of Excellence, has worked on surveys and on CABs. From 2013 - 2017 he was Communications Coordinator at EUPATI, and can´t overstress the importance of patient involvement. Rob also writes patient-friendly articles and edits medical textbooks.