Two years with HD on the Move

If you have attended any of our conferences, you have probably noticed ‘HD on the Move’ in the programme. The sessions have been a regular part of our conferences since 2017. But what is the story behind and who is the man always leading the morning sessions? 

HD on the Move took place the very first time at our Sofia conference in 2017. Astri Arnesen, President of the European Huntington Association (EHA), got the idea after meeting Rudolfo Vera at a Huntington’s disease event.  

Photo: Rudy Vera

Rudolfo Vera – known as Rudy – is born in Argentina but has been living in Spain for many years. In Spain, Rudy has been active in the Asociación Corea de Huntington Espa­nola (ACHE). 

Besides getting involved in the Huntington community, he is also heavily involved in sports. At the moment, Rudy is coaching a volleyball team.

That’s why it was a natural choice for Astri to ask Rudy whether he would like to lead HD on the Move during our conferences.

The best medicine

– What is HD on the Move?

– It’s a group of activities, such as walking, running, swimming and playing football, that take place during European Huntington Association conferences, Rudy explains.

Since the Sofia conference, HD on the Move has been taking place during EHA’s Business meeting in Vienna (2018) and conference in Bucharest (2019).

– It’s a way of showing that physical activity is the best medicine we have for Huntington’s disease at the moment.

– Live better

Over the last years, studies on physical activity has shown several benefits for people with Huntington’s disease: 

Improved quality of life, improved balance, ability to walk further and faster, prevention of aggression and reduction in symptoms of depression and anxiety. 

Monica Busse at Cardiff University told us in an interview last year that we are not at a point where we can say that physical activity delay disease progression:

– But we can say that by staying active we can help to maintain balance and maintain function and help people to live better.

Online resources

According to Rudy, a good way of staying active is to do different type of activities. 

– Do you have any tips if there’s someone reading this, but doesn’t really know where to start?

– There are many suggestions from the European Huntington’s Disease Network (EHDN) Physiotherapy Working Group that can be found online. 

Active Huntingtons

The EHDN Physiotherapy Working Group was essential in developing the Active Huntingtons resource that can be found on the European Huntington Association website. The resource is specifically aimed at helping people with Huntington’s disease to stay active. 

Here, you can find more information about type of activities and how to support being physically active. 

More: Find the Active Huntingtons resource here.

Rudy states that it is important to avoid injuries by doing the right activities. Therefore, consulting a doctor or physiotherapist might be of great help.

HD on the Move in the future

– Last question: will you continue to organize HD on the Move in the future?

– Of course, it’s a pleasure. My wife has taught me a lot, and I really like to share this experience.  

HD on the Move!
Left to right: Svein Olaf Olsen and Paul de Sousa. Soccer tournament.
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HD on the Move during our conference in Bucharest, 2019.

HD on the Move during our conference in Sofia, 2017.