Board of Directors

Marina Zapparoli-Manzoni

President until Dec 2023

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.

Lars B. Christensen

Vice-president until Dec. 2024

Jean Benard

Treasurer until Dec. 2024

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.

Giorgia Tartaglia

Secretary until Dec. 2024

2019 to date. From 2018 to 2019, 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 until Dec. 2024

2021 to date; 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.

Lori Renna Linton

Advisor until Dec. 2024

2018 to 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. 

Marcos Guadalupe

Advisor until Dec. 2023

MG is the president of the Spanish patient association AEPEF.