Interview with Patrick Weydt: Building on a Critical Mass

Highlight from the: EHDN Newsletter_March2025_Issue54

With a longstanding commitment to HD research and EHDN, Patrick Weydt was elected Chair of the EHDN Executive Committee in 2024. We spoke with Patrick to find out more about his motivation and background, as well as his vision for the future of HD research.

How did you get involved in the HD community?
Even as a medical student, I was fascinated by the brain and its diseases. Early in my career, I became interested in amyotrophic lateral sclerosis – ‘ALS’ for short. It was an exciting time, as the first ALS gene and the huntingtin gene were discovered only weeks apart. I clearly recall my first encounter with an individual with HD during an elective abroad in Montreal. He was a very nice man from a large family, and very quickly, the impact of the autosomal pattern of inheritance became evident to me as an impressionable young student.

After completing medical studies in my hometown of Berlin, I started my residency at the University Hospital in Munich. Here, I received a prestigious fellowship to undertake postdoctoral research at the University of Washington in Seattle. This was an incredibly formative and stimulating time: not only did I meet my wonderful wife, but I also started to participate in a tiny but very dedicated weekly neurodegenerative research journal club – one that included a brilliant fellow postdoc named Flav Giorgini, who was working on yeast genetics at the time. A young principal investigator in that group, Albert La Spada, was already famous for having discovered the first CAG-polyglutamine repeat expansion mutations as a graduate student.

Albert La Spada became a great friend and an important mentor. Together, we obtained a small National Institutes of Health seed fund grant to explore our serendipitous discovery that HD mice have difficulty with temperature regulation resulting from mitochondrial and transcriptional dysregulation. These findings were very well received in the field and helped me to be recognised as a scientist. Metabolic changes in HD were not getting very much attention at the time, but I very much remember being part of a small poster session at a huge neuroscience conference where I hit it off with a fellow young researcher whose poster was right next to mine, and the only other poster on metabolic aspects of HD. That student was Åsa Petersén, from Lund University, who has since become a leader in the HD field as well as a wonderful friend and colleague, and now EHDN Deputy Chair.

‘I always think the HD community is really special – it stands out across different research fields as being very collaborative and supportive.’ Patrick Weydt

Wanting to continue my clinical training in neurology and having founded a family with my German wife, I was keen to return to Germany. I heard Bernhard Landwehrmeyer present at a Gordon conference, introducing the concept of the European Huntington’s Disease Network. This all seemed very ambitious – but also very exciting. Bernhard is quite a force of nature, and so I took a leap of faith and got involved by joining his clinical group at the University of Ulm. This gave me a ringside seat during the early days of EHDN, even though initially, I was primarily occupied with my residency and my budding family.

I was recruited to Bonn in 2016 as an ALS specialist but negotiated setting up an HD clinic, which was dearly missing there. Now, we have a dedicated clinic that cooperates with the German Center for Neurodegenerative Diseases, where we see around 120 HD-impacted individuals, and just this year, became an Enroll-HD site. Interestingly, I recently discovered that Nora Guthrie – daughter of Woody Guthrie, the American songwriter, musician, writer, and political activist who died with HD in 1967 – also lives nearby some of the time, and she has become very supportive of my centre. Readers may remember Nora from her incredibly inspiring presentation at the 2022 meeting in Bologna. Despite HD being a rare disease, there are many interconnections in this small but hugely critical mass of people.

How did you get involved with EHDN?
During my time in Ulm, I was nominated to the EHDN Scientific and Bioethics Advisory Committee in 2012 and was elected Chair of this group in 2014. Back then, we didn’t have Zoom calls but discussed the funding proposals by phone, so things were very different! It was a tremendously informative and stimulating experience that showed me how rewarding it can be to contribute to the EHDN community. In 2016, just as I was being recruited to Bonn, I decided to run for the EHDN’s Executive Committee and was elected at the plenary meeting in The Hague. I was elected Deputy Chair in 2018 and helped Anne Rosser steer the network through the pandemic. I was re-elected to the EC in 2022 and became Chair in 2024, as announced at EHDN & Enroll-HD 2024 in Strasbourg. This was an amazing event, and I really encourage the EHDN membership to become involved in our working groups and committees. It is this membership participation which makes the EHDN such a vital and dynamic organisation.

What is your vision for the future of EHDN?
One of the greatest strengths of EHDN is that it is a constantly evolving organisation. The mission of EHDN is to advance research, facilitate the conduct of clinical trials, and improve clinical care in HD. An important part of our work is to help provide an infrastructure to allow innovative research and informative clinical trials communicating research results, be they clinical trials, or basic science advances such as somatic instability, to the community. Clinical trials have become, wonderfully, a particularly active area in the HD field. The more results we get, the more complex these results have become, as we have seen in the past few years. Rarely do we see clear yes or no answers but rather complex outcomes that require nuanced interpretation. As an unbiased voice in the field, it is the responsibility of EHDN to share the dissemination and interpretation of these trials appropriately with the HD community and beyond.

‘As an unbiased voice in the field, it is the responsibility of EHDN to share the dissemination and interpretation of these trials appropriately with the HD community and beyond.’ Patrick Weydt

What can you share about the next plenary meeting?
The next plenary meeting will take place in Krakow, Poland, in 2026. There is a lot to look forward to! We have appointed a programme committee, and planning is well underway. We saw in Strasbourg that integrating the EHDN plenary with the Enroll-HD meeting worked really well, so we are keen to align these meetings again in 2026. We also saw that the updates in clinical trials session was particularly well attended and received, so we are keen to build on the success of that in 2026. Further details about Krakow will be shared in due course, so watch this space!

What is your motivation in life?
My family is, of course, hugely important to me. We have gone through some terrible hardships together, and this has strengthened us. Gathering strength through hardship is something that I often see in HD families, and it has given me great inspiration. I enjoy travelling and reading, and have recently taken up chess – something which I greatly enjoy but clearly lack talent for! Perhaps lesser known are the facts that I was briefly a child actor and even juggled on national TV! Over the years, I have personally experienced the support that our close-knit HD community provides to everyone. We have a very special community that is not overly driven by personal ambitions but rather by the shared goal of finding an effective treatment for this terrible disease, HD.