Who we are

Marina Zapparoli-Manzoni

President

2017 to date,  Vice-president 2015 – 2017,  Treasurer 2013 - 2016 Secretary, 2011 – 2013.  Marina has been the treasurer since 2016 of the Italian HSP Association, founded in 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.

Hermien Remmelink

Vice-president

2017 to date, Secretary 2016 – 2017. 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.

Martin Ott

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.

Giorgia Tartaglia

Secretary

since 2019. From 2018 to present, VP  and since 2013 member of the Executive Coucil of of the Italian HSP Association, Expert Eupati Patient Representative on drug research and development,

She is the mother of two children, one of which was with HSP35 at the age of

Administrative Office and Communication Office at the Lazio Rare Diseases Coordination Lazio Rare Co.L.Ma.Re,

Gerald Fischer

Scientific Advisor

since 2021; Assistant Scientific Advisor from 2019 to 2020 – Gerald received his PhD in Electrical Engineering from the Technical University Graz, Austria in 2000 and his venia docendi in Biomedical Engineering from UMIT-Private University for Health Sciences, Medical Informatics and Technology in Hall in Tirol, Austria in 2007. From 2000 till 2002 he was a postdoctoral research fellow at the Department of Cariology, University Hospital Innsbruck. From 2004 till 2006 he was the head of the research group for Biomedical Modelling at UMIT. In 2008 he was a founder of the start-up company afreeze GmbH. He was in charge for the development of the coolloopTM  cryoablation catheter for treatment of atrial fibrillation from basic concept to market approval.

In 2016 and 2017 Gerald’s son and daughter, respectively, were diagnosed with a complicated, autosomal recessive form of hereditary spastic paraplegia (HSP). Together with his wife Wilma he co-founded the Austrian charity stopp-HSP for supporting research on symptomatic and causal treatment of HSP. He shifted his personal research focus to the field of Neurophysiology. He is a principal investigator of a research project on applying Signal-To-Noise-Management for promoting the use of Somatosensory Evoked Potentials as a diagnostic markers in various progressive neurodegenerative diseases including HSP. Find out more about Gerald’s research on ORCID.

Webmaster

2018-date. Patient Representative (2017- to date) for European Reference Network for Rare Neurological Diseases (ERN-RND), PAO for PROSPEX, co-founder of Potato Pants. Lori teaches English Literature in the IB program at  the Gymnasium Klosterneuburg. She was diagnosed with HSP in 2008. 

Jean Benard

Scientific Advisor

2011 – Nov 2020.  Assistant Scientific Advisor, Nov. 2020- present. Vice-President in 2012. 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.   In 2010, he contributed in establishing the European Federation Euro-HSP. He is mainly interested in the genetic and physiotherapeutic aspects of HSP. Jean is daily in touch with patients, providing them with scientific and medical advice.

Dorthe Lykke

Currently not a board member but she started working in 2009 to bring Euro-HSP into existence. She has been a member of the Board since 2007, Vice-president 2010 – 2011, President, 2011 – 2017. Webmaster 2012 - 2018. Dorthe is a retired teacher, M.Ed. She was diagnosed with HSP in 2004. 

Rob Camp

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.