Sabina Brennan, c. Psychol, PhD, Trinity College Dublin, Ireland
Sabina Brennan (PhD., C.Psychol.,PsSI.) is a psychologist, cognitive neuroscientist, writer, filmmaker and award-winning science communicator.
Dr Brennan’s scientific research at Trinity College Dublin has focused on brain health risk and protective factors to establish how decline in cognitive function might be prevented or delayed.
Her public engagement projects aim to increase the societal impact of scientific research by translating complex content into easy-to-understand resources for the general public and key stakeholders. She developed www.brainhealth4ms.com to share easy-to-understand information about brain health for people with MS.
In 2016 Sabina was the inaugural recipient of Science Foundation Ireland’s Award for Outstanding Contribution to STEM Communication. That same year she was a finalist in the US-Ireland Research Innovation Awards. In 2017 she received the Provost’s Award for Innovation in recognition of her work for social impact. Most recently she was listed as one of IMAGE magazine’s Women of the Year 2018.
Sabina has established a strong media profile and is founding director of Trinity Brain Health a Trinity College spin out company that specializes in translating complex scientific content into fun and entertaining animations. Her first book 100 Days to a Younger Brain will be published by Orion Spring on March 7th 2019.
Trevis Gleason, award-winning writer and former chef
Trevis L. Gleason is an award-winning writer and former chef. His memoir, Chef Interrupted won the Prestige Award of the International Jury at the Gourmand International World Cookbook Awards.
Gleason is ambassador for the national MS Society USA and MS Ireland. He has been living with secondary progressive MS since 2001.
He has been published in the Irish Times, Iris Examiner, Irish Independent, The Lancet and the New England Journal of Medicine among others and writes the Life with Multiple Sclerosis blog.
An American by birth, Gleason lives in the west of County Kerry with his wife, Caryn and their two Wheaten Terriers, Sadie and Maggie.
Daphne Kos, OT PhD, KULeuven, Belgium
Daphne Kos graduated as occupational therapist (OT) and movement scientist. She worked in the National MS Center in Melsbroek (B) as OT practitioner and researcher and studied fatigue management and assessment in people with multiple sclerosis in her PhD project.
Currently she is professor and co-manager of the OT bachelor and master programme in AP University College Antwerp and in KU Leuven (interuniversity programme with Ghent, Hasselt and Antwerp). Daphne Kos is vice president of the European organisation for rehabilitation in MS (RIMS). Her research domain is situated in the area of fatigue, occupational performance, use of (rehabilitation) technology, life balance, goal setting and assessment, mainly in multiple sclerosis.
Marcello Moccia, MD PhD, Queen Square Institute of Neurology, London, UK
Dr. Marcello Moccia works and studies at the UCL Queen Square Institute of Neurology (London, UK), at the National Hospital for Neurology and Neurosurgery (London, UK), and at the Department of Neuroscience, “Federico II” University of Naples (Italy).
Dr. Moccia received his medical degree from Federico II University of Naples in 2010 and completed his training in Neurology (2016) and PhD in Neuroscience there (2019). He has been awarded with a ECTRIMS-MAGNIMS fellowship in 2017. His main research interests is multiple sclerosis. Dr. Moccia is Academic Editor of multiple neurological journals and has authored over 100 peer-reviewed and indexed articles.
IGNACIO AIZPUN, MBA, Telefónica, ATAM
Ignacio Aizpún studied Economics and Business Administration at the University of Navarra. He also made an executive program of General Management at the IESE Business School.
He completed his training with several technical and management improvement programs in entities such as the IESE Business School, the IE Business School, INSEAD and the San Pablo CEU Business School, as well as in the Master of Construction of the School of Architecture at the University of Navarra.
He began his professional career in the field of real estate development and construction, but about 20 years ago he made the leap to the sector of social and sociosanitary services.
In 2001 he joined Telefónica as the General Director of ATAM. He is currently leading a deep digital transformation of the entity he manages, through projects such as the EPSILON initiative, whose purpose is to promote a new way of approaching the treatment of information, for the development of a new sociosanitary paradigm.
Executive Director EFNA
Donna became the Executive Director of EFNA in June 2012.
Donna’s training is in Journalism, but she has worked with patient organisations in the neurological sector – in various roles – since leaving university. This included work with the European Migraine and Headache Alliance [EMHA] and the Migraine Association of Ireland [MAI], as well as being a representative to the Neurological Alliance of Ireland.
Donna oversees the strategic direction of EFNA and leads in the creation and implementation of its annual workplan, projects and activities. Since joining EFNA, Donna has led the development of some of EFNA’s current keynote initiatives such as its MEP Interest Group on Brain, Mind and Pain and Training Initiatives for Neurology Advocates.
She is also active in representing EFNA and the neurology patient community externally, including as a current Board Member of the European Brain Council and as a Member of the European Academy of Neurology’s European Affairs Sub-Committee.
Arnfin Bergmann, Neurologist
CEO NeuroTransData GmbH / NeuroTransConcept GmbH
Vaiva Sinickiene, person living with MS
Vaiva studied Economy and Management at Kaunas University of Technology, Lithuania. She began my career as administrator. Working over 14 years in accounting in international environment.
Living 11 years with MS, interesting in newest information concerning MS.
Georgina is the Head of Campaigns and External Relations at the UK MS Society. Since 2015 Georgina has been a member of the European Multiple Sclerosis Platform (EMSP) Executive Committee.
At the MS Society in the UK, she works to ensure that policy reflects the needs of people with MS, on issues like access to treatment, welfare, employment and social care.
Prior to working at the UK MS Society, Georgina worked in Brussels on EU health policy for the consultancy Burson Marsteller.
Together with the Nuffield Trust, MS Society UK published their report on ‘Improving care for people with MS: The potential of data and technology’, which looked at how new technologies are already helping people with MS, where there's scope for them to do more.
Marleen Verbeeck, clinical research professional
Dr. Marleen Verbeeck is a clinical research professional since 1995.
After her academic career in scientific research she gained solid grounding in clinical research, first as a clinical research associate, later as a medical writer and trainer. She is author of scientific papers, clinical trial study protocols and final study reports (Phase I to IV).
Since 2004 she works at the European Centre for Clinical Research Training (ECCRT) and trains staff from multinationals and small businesses of the pharmaceutical and medical device industry, of universities, as well as non-profit research organisations across Europe, the United States of America, Asia and the Middle East. As a trainer she is specialised in clinical operations and trial legislation.
Marleen enjoys developing, interactive lecturing, evaluating and testing comprehension of courses and expands her vast educational classroom expertise by exploring new learning techniques.
She is providing classroom and virtual teaching of academics and company staff, located globally, but also tailor-made sessions adapted to the specific needs of client and/or company.
Tadas Jačiauskas, chairman of the board at Lithuanian Multiple Sclerosis
I started working at Lithuanian radio and television 15 years ago. I used to work in various television projects – TV show about cars, documentary series from villages, culture show. Currently, I am responsible for culture policy at Lithuanian National Radio and Television.
The same time as I started my career I was diagnosed with MS. Now, besides my responsibilities at home as a husband and father and at work as a culture editor, I am the chairman of the board at Lithuanian Multiple Sclerosis Association. It is an umbrella organization that associates 11 local MS organizations from various Lithuanian towns.
Susanna van Tonder, patient advocate
Susanna van Tonder, a young woman with multiple sclerosis (MS) from Luxembourg, is a board member of the Multiple Sclérose Letzebuerg (MS Society of Luxembourg) and a member of the EMSP’s Young People’s Network (YPN).
In addition, she helps spread the word of the shift.ms community in her volunteer role as a shift.ms champion and MS Buddy. Furthermore, she advises on disability affairs within the Higher Council for the Disabled in Luxembourg. Here, she represents the needs of the multiple sclerosis community among others. Susanna received her MS diagnosis in 2016 after having had invisible symptoms for more than a decade.
She is a comitted patient advocate who raises awareness about invisible illnesses/disabilities (MS in particular) and the challenges they bring along. She hopes to help create a more just society based on inclusion and non-discrimination, empathy and understanding. Susanna has worked in several projects as patient advisor and she is currently undertaking studies in Psychotherapy and Counselling.”
Steven van de Pavert, icometrix
Steven holds a PhD in neuroscience from University College London with focus on grey matter pathology and has subsequently spent some time with Teva and Novartis.
In his present role at icometrix, the leading company to quantify brain scans using artificial intelligence, he leads a new service for people with MS: icompanion.
icopmanion supports pwMS to get information on their own MRI scans and digital scores and, moreover, it allows people with MS to track their disease using their mobile phone.
Steven has a strong believe that data greatly improves our understanding of the disease course of people with MS and healthcare more broadly.
Donna Nahal, patient advocate
Diagnosed with Multiple Sclerosis at 17, Donna Nahal is using her 16 years of experience living with the condition to promote change and a more progressive approach towards disability and chronic illness.
Donna is British Asian, and she has identified that there is lack of people from this community engaging in MS related activities. She is courageously addressing the attitudes, myths and misconceptions about MS here, by providing education on what it really means to live with a chronic condition. is sending out a message of ‘seeing the individual behind the condition, and appreciating all that they are.’
Donna is also reaching out to young people with MS. As well as being a member of EMSP’s Young Peoples Network, she is also leading the formation of a Young Peoples Group within The Birmingham MS Group. She is reaching out to society to challenge the sigma and judgement that she has faced as a young disabled person.
Amongst other things, Donna is a speaker, patient advocate and blogger. She believes that her core principles of love, positivity and gratitude have led her to finding strength through adversity. MS is a gift she didn’t ask for but one that has given her experiences that are unparalleled. She’s living this beautiful life and winning, now she wants others to join her for the ride.
Vanessa Pott, Patient Advocacy and Strategic Partnerships, Merck KGaA
In her role as Director, Patient Advocacy and Strategic Partnerships, Vanessa Pott is responsible for the development and implementation of Merck KGaA, Darmstadt, Germany’s patient engagement strategy in neurology and immunology, embedding the patient voice throughout the continuum of research, develop and commercialization.
Vanessa enjoys creating sustainable, one-of-a-kind partnerships with the patient and carer community to support Merck’s vision of becoming the most patient-directed healthcare company. She is particularly proud of her work in multiple sclerosis (MS), leading key collaborations that aim to better understand MS and enable others to do the same – through shining a light on real-world experiences of MS patients and investigating the multiple perspectives from people surrounding them.
Prior to joining Merck, Vanessa worked as an Account Director at Edelman, a global communications marketing firm, where she oversaw policy and stakeholder engagement programs for healthcare clients. Before that, she worked as a Senior Public Affairs Officer for MedTech Europe, the European medical device industry association. She launched her career at the EU Committee of the Regions where she analyzed the cross-border delivery of healthcare services in Europe.
Vanessa holds a BA in International Culture and Business Studies and a MA in European Studies.
Izabela Sopalska-Rybak, person with MS
Nicola Bedlington, Secretary General, European Patients’ Forum
Nicola Bedlington is Secretary General of the European Patients’ Forum (EPF) and joined as its first Executive Director in June 2006. She was the Founding Director of the European Disability Forum, an umbrella organisation uniting over 70 European disability non-governmental organisations (NGOs) to advocate for the human rights and inclusion of disabled citizens in Europe (1996 to 1999), and prior to this she worked as an external expert for the European Commission, heading the NGO unit within the HELIOS Programme (1991 to 1996).
From 2004 to 2006, she worked for the Swiss Government, leading the Environment and Schools Initiatives Secretariat, an international government-based network set up by the Organisation for Economic Co-operation and Development focusing on innovation, action research and policy development in the field of Education for Sustainable Development.
Whilst in Switzerland, she has also worked as an independent consultant/evaluator, specialising in European social and development policy and health advocacy.
Nicola studied business and human resource management in the UK and France.
The EPF is an umbrella organisation that works with patients’ groups in public health and health advocacy across Europe. Their 72 members represent specific chronic disease groups at EU level or are national coalitions of patients.
Liesbet Peeters, Hasselt University
Liesbet M. Peeters is a data scientist at the Biomedical Research Institute of Hasselt University (Belgium). In 2013, she finished her PhD in Bio-Engineering Sciences at the KULeuven in Belgium. She has expertise in molecular genetic- and immunological techniques as well as quantitative genetic analysis. Liesbet is familiar with statistical programs, several data management software and has experience in Bio-informatics.
Her research focusses on developing data sharing procedures using the FAIR principles (=Findable, Accessible, Interoperable and Re-usable).
She is a member of the Core Group of the European European Patient Forum initiative “Data Saves Saves”. She is one of the main initiators and coordinator of The MS Data Alliance. The MS Data Alliance aims to increase data quality by increasing the awareness of the importance of real world data and to decrease the effort to find, access and re-use data through the development of tools for data discovery and sharing.
She is a member of the ELIXIR Belgium community focussing on constructing a sustainable infrastructure for the sharing of biological information throughout Europe. Elixir includes 20 countries covering more than 180 research organisations all over Europe.
Paola Zaratin, Italian MS Society
Paola joined the Italian MS Society on February 2010 where she currently holds the position of Director of Scientific Research. Paola has more than 25 years of experience working in Neuroscience Research and in the last 18 years in the field of Multiple Sclerosis. The studies in academia on neuronal plasticity mechanisms opened her up the opportunity to apply translational research in an industrial setting to support the discovery and development of new therapies for Multiple Sclerosis. Paola has 21 years of Drug Discovery and Development experience in the Neuroscience area, having worked for Serono (now Merck Serono) group and for Glaxo-SmithKline group. Paola held a number of managerial positions and was responsible for delivering a number of candidate molecules to development as well as large scale of external collaborations.
She possesses vast experience in the Pharma Organizations (Master Degree in Business Leadership at MIT Sloan School of Management - Cambridge, Masschusetts, USA) and takes responsibility for organizational changes and business transformations in M&As. Bridging scientific results to people affected by neurological diseases (translational and advocacy research) has always been Paola’s guiding research and professional interest.
In 2010 Paola’s choice to work for a non-profit granting agency fulfils her whole carrier’s effort aimed at translating research into improvement of medical care of neurological patients (P. Soelberg Sorensen P et. Al. The Multiple Sclerosis Care Unit. Mult Scler. 2018). Paola is currently member of the International Medical and Scientific Board of the International Multiple Sclerosis Federation. She is also member of the Scientific Committee and of the Industry Forum of the International Progressive Multiple Sclerosis Alliance whose mission is ‘to expedite the development of effective disease modifying and symptom management therapies for progressive forms of multiple sclerosis’ (Fox et al., “Setting a research agenda for progressive multiple sclerosis: The international collaborative on progressive MS”. Multiple Sclerosis Journal 2012).
As director of scientific research of the Italian MS Society Foundation, in close collaboration with relevant stakeholders, Paola has developed a management model for the Italian MS Society portfolio that also allows effective programs of technology transfer aimed at developing new therapies (pharmacological and rehabilitation) for people with MS (Zaratin et al. Nonprofit foundations spur translational research, Trends Pharmacol Sci. 2014; Zaratin et al. Progressive MS Alliance Industry Forum: Maximizing Collective Impact to Enable Drug Development. Trends Pharmacol Sci. 2016). The above model has attracted public and Industry partnerships [joint patent application UNIMI-FISM covering 3 families of ligands active on GPR17 to be further developed as new remyelinating agents].
Paola has experience in leading national and international multidisciplinary and multistakeholder teams and developing collaborative networks in Public, Profit and non Profit sectors. Paola is the coordinator of the EU Responsible Research Innovation H2020 MULTI-ACT three years’ project (MULTI-ACT: A Collective Research Impact Framework and multi-variate models to foster the true engagement of actors and stakeholders in Health Research and Innovation; http://www.multiact.eu/; Evaluation woes: define metrics from the off. Zaratin P, Salvetti M. Nature. 2018). The MULTI-ACT project, submitted to RRI H2020 SWAFS-05-2017 call: New constellations of Changing Institutions and Actors, reached the stage of Grant Agreement in December 2017 with an evaluation of 15/15. Paola is author of 73 publications (67 pubmed-indexed papers, 1987-2019) and 6 patents.
Elisabeth Kasilingam, CEO, EMSP
In September 2016, EMSP’s long-serving Programme Manager Elisabeth Kasilingam was appointed as the new Managing Director of the organisation.
Elisabeth joined EMSP in 2009 as a Project Coordinator and has since managed various projects. Her role subsequently evolved into Programme Manager.
With her background in law and European Affairs and a special interest in Human Rights, Elisabeth started her professional experience as assistant policy officer with Brussels-based NGOs Eurochild and the European Patients’ Forum (EPF).
Pedro Carrascal, President, EMSP
Pedro Carrascal is the President of the European Multiple Sclerosis Platform (EMSP); CEO of EME (Multiple Sclerosis Spain); the Biscay MS Society and the MS Basque Foundation.
Since 2007 Pedro is board member of the Multiple Sclerosis International Federation (MSIF). In September 2012 Pedro became member of the European Multiple Sclerosis Platform (EMSP) Executive Committee and has served as Vice-President from 2017 till his elections as EMSP President in June 2018.
Pedro has been fully committed to the MS movement in Spain and is one of the promotors of the Spanish “Neuroalianza” (Spanish alliance of neurodegenerative diseases) created in 2012 and “Plataforma de Pacientes” (umbrella organization for the main patients NGOS in Spain) in 2014.