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European Huntington heights met at Lund summit

Nordic Huntington Disease Research Meeting
Prof. Åsa Petersén, Dep. of Experimental Medical Science, Astri Arnesen, President of The European Huntington Assocation and Patrick Weydt, the European Huntington Disease Network at the Nordic Huntington Disease Research Meeting in Lund.

A few weeks ago The Huntington Disease Center in Lund, Sweden, welcomed researchers, clinicians and representatives from patient organizations in the Nordic countries to the second Nordic Huntington Disease Research Meeting in Lund. Among the prominent visitors were Patrick Weydt, representative of the European Huntington Disease Network and Astri Arnesen, President of The European Huntington Association.

These are exciting times for the Huntington Disease Community and the research is moving towards clinic at an unprecedented pace. The new developments have to be shared quickly so that everybody, that is, bench scientists, clinicians and eventually patients, can benefit, said Patrick Weydt, himself a clinician and scientist in Huntington Disease (HD) and a representative of the European Huntington Disease Network, EHDN, when we caught up with him at the meeting:

– Scandinavia and Lund University are highly recognized in the HD research field already, but it was very inspiring to see how dynamically also the next generation of researchers is coming together.

Astri Arnesen, President of the European Huntington Association, EHA, also commented on the meeting:

– As a representative from the Huntington families I want to be in touch with researchers all over Europe. EHA is advocating for and supporting good science in HD. In my opinion we need to nourish the sense of all HD research activities as pieces in a big puzzle.  Nobody can manage to stay updated about everything ongoing. Meeting and discussing each others projects is fruitful and leads to more collaboration. Everyone in this field are part of, what EHA calls, Huntingtonians United and good teams are characterized by interacting players.  

55 participants from 4 countries met up to share research results and clinical experiences at the Lund University Biomedical Center, BMC. They gathered in Lund for the second Nordic Huntington research meeting.

European Huntington researcher shared research results and clinical experiences at the second Nordic Huntington research meeting. Photo: Agata Garpenlind
European Huntington researcher shared research results and clinical experiences at the second Nordic Huntington research meeting. Photo: Agata Garpenlind.

Among the participants were also Professor Nico Dantuma from the Karolinska Institutet, who is an expert on the Nobel-prize awarded ubiquitin-proteosome system that takes care of misfolded proteins inside cells, and Associate Professor Merja Voutilainen, Helsinki University, who is developing novel therapeutics for several neurodegenerative disorders using the growth factor CDNF.

– It is important to bring research and clinical care closer together in order to make an impact for families with Huntington Disease. We are organizing this meeting for the second time and were happy to see that so many wanted to contribute to make these meetings so rewarding, said Åsa Petersén, researcher at the Lund University Department of Experimental Medical Science (EMV) and head of the Huntington Disease Center, who arranged the meeting in Lund, together with another HD researcher at the department, Professor Maria Björkqvist as well as Jenny Månsson, administrator at the HD Center and at EMV.

The meeting was funded by the government funded strategic research area Multi Park and the Huntington Disease Center (in Swedish), a coop between Lund University and Region Skåne. The meeting was characterized by a great atmosphere of enthusiasm, respect and creativity, according to a very content Åsa Petersén.

– These meetings allow scientists and clinicians to share new information and inspire each other to find novel ways to approach the key questions in the field. The meeting had a great mix of short data blitzes, where younger colleagues got excellent opportunity to present and discuss their data, and longer talks representing both key molecular mechanisms of the disease as well as the European perspectives by the representatives from the European HD Network (vice-chair, Dr. Patrick Weydt, Bonn) and the patient organization European Huntington Association (President Astri Arnesen, Oslo).

What are the trends in your research field right now?

– It is exciting that there are ongoing clinical trials using different molecular strategies to lower the amount of the disease causing protein huntingtin. At the same time, there are a number of key questions that still need to be answered in order to inform these and coming trials as well as to enable the development other therapeutic strategies. We need to know for example what brain areas are important for the development of the different parts of the disease, when a damage to the brain caused by the mutant huntingtin protein can be reversed and how early in the disease process we need to intervene in order to prevent the disease.

What is Huntingtons disease?

Huntington disease is a fatal neurodegenerative disorder without any disease-modifying treatment. It is caused by an expanded CAG triplet repeat in the gene encoding the protein huntingtin. It is inherited in an autosomal dominant fashion meaning that the risk to inherit the disease-causing gene is 50 percent for each child to an affected parent. The disease typically manifests in midllife and it is characterized by a triad of motor symptoms, cognitive decline and psychiatric symptoms. It affects around 1 in 10 000.

About Åsa Petersén

Name:Åsa Petersén
Age: 45

Family: Married and 2 children (5 and 8 years old)
In free time: Spending time with family, and running when time allows.
Background:Senior Consultant in Psychiatry at Region Skåne and Professor of Neuroscience, EMV. Head of the clinical HD team at the Neurology clinic, SUS, Lund.
Research area: Huntington disease.
Most prominent research: Identification of hypothalamic pathology in Huntington disease and elucidation of neuronal mechanisms underlying the psychiatric aspects of the disease.
Eric K. Fernström award at the Medical Faculty of Lund University 2018.
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