Meet the Candidates for EHDN’s Executive Committee

The Executive Committee (EC) governs the EHDN, directs and oversees its activities, and establishes its strategy, as per Article 4 of the EHDN Constitution. Election to the EC offers an exciting opportunity to take on a vital role in shaping the future and direction of the organisation. Voting for candidates opened in early July 2024, and the results will be announced at EHDN & Enroll 2024 in Strasbourg.

A short introduction to each candidate and a summary of their supporting statement are provided below. Regular members of the EHDN members can read the candidate statements in full and cast their vote at https://www.euro-hd.net/html/network/project/voting (login required). Voting will close on 12 September 2024.

Ahmad Aziz German Center for Neurodegen-erative Diseases, Germany ‘In my capacities working with the EHDN, including as chair of the Scientific and Bioethics Advisory Committee, I became convinced of the extremely

valuable and important benefits that EC members can offer HD care and research. I hope to continue to contribute to the EHDN’s goal of stimulating and fostering innovative and clinically relevant research. My mission is to contribute to a better life for all people living with HD.’

Esther Cubo Hospital Universitario Burgos, Spain ‘My vision is to improve the qua-lity of life of patients and care-givers, and to offer opportunities for young researchers from underserved areas to develop their capabilities by creating an international research

group. I also hope to promote multidisciplinary care for patients with HD, delivering focused education about HD in medical specialities, including family doctors, medical internists, and allied health professionals.’

Huu Phuc Nguyen University of Tübingen, Germany ‘I am confident that I can help the EHDN define and support research initiatives, as well as contribute to guidelines and recommendations on genetic testing questions in both diagnostic and research contexts.

With the genomics era on the horizon, I foresee a need for updated guidelines on diagnostics and novel genetic research directions and that these developments will need to be disseminated in the HD community.’

Jaime Kulisevsky Sant Pau Hospital, Spain ‘The EHDN is well positioned to lead advancements toward effective HD treatments and a cure. I believe my trajectory and insights can offer valuable perspectives, catalysing innovative solutions in our

shared mission to alleviate the burden of HD. I humbly offer my candidacy to the EHDN Executive Committee, eager for the opportunity to continue contributing to our community and embarking on a collective journey to combat HD.’

Klaus Seppi Innsbruck Medical University, Austria ‘I would like to see the EHDN pursue a strong partner to shape the future of research and management of HD in a global way with the ultimate goals to improve the care of patients and families, to contribute to the

development of a cure for HD and to spread knowledge of HD in the community to increase public awareness of HD. I would like to be a leading part of this mission.’

Mayke Oosterloo Maastricht University and Maastricht University Medical Center, Netherlands ‘I believe I can contribute to the EC on both clinical and scientific topics. As a clinician, I am practical and solution-focused. I like to collaborate with patients,

caregivers, and basic scientists, and I like to start initiatives and work on several goals in parallel while ensuring success. I believe that these personal characteristics will benefit the work of the EC and help the HD community more generally.’

Nayana Lahiri St. George’s University Hospitals NHS Foundation Trust, UK ‘I am passionate about the EHDN’s mission to advance HD research, conduct clinical trials, and improve care in HD. With recent advances in genetic

modifiers particularly, having Clinical Genetics expertise in the EC will be valuable. However, it is also crucial to maintain a focus on symptomatic management and psychological support for patients and families now whilst preparing for a future with HD-modifying therapies and ensuring access to those therapies. I would bring my expertise as a clinical geneticist who is involved at all stages of the HD patient and family journey.’

Tom Massey Cardiff University, UK ‘I’m a research Neurologist and currently co-chair the EHDN Genetic Modifiers Working Group and the UK HD network. The EHDN provides a fantastic continent-wide foundation for HD research and

development, but it could be improved further. If elected, I want to do three things: improve support for early-career researchers, embed those with lived experience of HD more into EHDN workflows, and streamline EHDN-linked working groups and structures.’

‘We are thrilled to have such a strong field of nominations for the EC. We encourage all EHDN regular members to take a few moments to read through the candidate statements and vote. Each and every vote really will count, and we value your input in this important process. We look forward to seeing you in Strasbourg for the election results!’

Anne Rosser and Patrick Weydt