Advocacy Training Speakers

I come from a family affected by Huntingtons disease. My mother, brother and sister have passed away with the disease. I have been engaged in patient advocacy since we learned about my mother’s diagnosis. First in the Norwegian Huntington Association for almost 30 years and since 2008 in the European Huntington Association and European Federation of Neurological Associations. My educational background is teaching, developmental psychology, communication, innovation and management. I ended my carrier within the educational system in 2016 when I took over as President and CEO of the European Huntington Association (EHA) a position I still hold. In 2023 I was elected President of EFNA. Also, a position I still hold. I am based in Norway where I live together with my husband.  

Dr. Justin Jordan is Vice Chair of the Advocacy Committee and member of the Brain Health Committee for the American Academy of Neurology (AAN). He also serves as the AAN member representative to the EAN’s Brain Health Mission. Dr. Jordan is a veteran advocate and advocacy educator, having moderated the AAN’s Palatucci Advocacy Leadership Forum previously, and also serving as co-chair of the AAN/WFN Global Advocacy Leadership Program in 2025. Outside of his work for the AAN, Dr. Jordan is a neurologist from Dallas, Texas with a busy academic clinical practice and an extensive translational and clinical research portfolio focused on brain tumors, neurofibromatosis, and schwannomatosis. 

Matilde Leonardi is a neurologist, paediatrician, neonatologist, and paediatric neurologist specialising in bioethics. She is Director of Unit at IRCCS National Neurological Institute Besta. Her activity in the field of disorders of consciousness allows her team to have one of the largest epidemiological databases on such patients worldwide. She is a WHO expert on disability and ageing, co-chair of the WHO-FIC (Family of International Classifications) Functioning and Disability Reference Group- FDRG and Director of the Italian WHO Collaborating Centre Research Branch. Leonardi has co-ordinated and partnered on several, EU-funded and non-EU-funded research projects, including within the FP6, FP7, Horizon2020 programmes (MHADIE, MURINET, COURAGE in EUROPE, PATHWAYS and partner in PARADISE, MARATONE  ATHLOS, CHRODIS Plus,EMPOWER). Dr. Leonardi is also a consultant on public health, UNCRPD monitoring and disability policy development for several European and non-European Governments and is an expert for the European Commission on public health, ageing, disability and neurosciences. 

 Dr. Antonella Santuccione Chadha is a medical doctor and global leader in neuroscience, psychiatry, and precision medicine. Her career spans academia, major pharmaceutical companies (Roche, Biogen), and health-tech start-ups (Altoida), where she led diverse, multicultural teams and mentored women scientists across continents. As Co-Founder and CEO of the Women’s Brain Foundation, she is redefining how science and innovation serve women’s health — promoting brain health equity through science, innovation, and collaboration. Recognised among Switzerland’s Top 100 Women in Business and recipient of multiple international honors — including the World Sustainability Award, the Veuve Clicquot Bold Woman Award, the Women Empowering Award, the Katherinenturm Project Award and in 2025, the Italian "Gentile da Fabriano" prize — Dr. Santuccione Chadha continues to translate scientific progress into social impact, inspiring a new generation of changemakers to lead with evidence and empathy. 

Donna Walsh joined the International Bureau for Epilepsy [IBE] as Chief Executive Officer in January 2022. Since her appointment she has been responsible for overseeing the new strategic direction of IBE and, is working to ensure IBE empowers and amplifies the voices of people with epilepsy globally. Prior to her role with IBE, she worked as Executive Director of the European Federation of Neurological Associations (EFNA) for 10 years. Donna has been active in representing the neurology patient community throughout her career, including as a board member of the European Brain Council, a member of the European Affairs Sub-Committee at the European Academy of Neurology, and as a member of the World Health Organization’s NeuroCovid Global Forum. Donna has also moderated and chaired many events and has shared patient insights at high-level conferences and meetings at institutions such as the World Health Organisation and European Parliament.