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. You find more information about Gerald's research here.

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. 

Wouter de Vries

Operational Advisor until Dec. 2026

Wouter holds an MSc in Systems Engineering from the Technological University in Delft and an MScBA from Rotterdam School of Management. He is the founder of YourSurprise, an international ecommerce company operating across Europe from 2005 already. YourSurprise sends out millions of personalized gifts each year.

A dedicated husband and father of three children, Wouter’s personal connection to hereditary spastic paraplegia (HSP), which affects his 18-year-old nephew, drives his commitment to finding a cure. His mission is to bring treatments to HSP patients by helping initiating and funding relevant research. Wouter brings in expertise to contribute to EuroHSP’s efforts in advancing research and finding cures for this rare neurological condition.

Marcos Guadalupe

Advisor until Dec. 2025

MG is the president of the Spanish patient association AEPEF.