In early April the European Huntington Association, represented by President Astri Arnesen and board member Svein Olaf Olsen, met people impacted by Huntington’s disease (HD) in Russia. Here is a letter from the inspiring meeting written by Astri Arnesen:
Russia, Moscow 12 points!
This is not the final in the Eurovision Song Contest, but the top score the Russian “HD pioneers” deserves from us when leaving Moscow April the 10th.
The 9th of April we met several dozens of Russian Huntingtonians. People we today call our friends. What met us were however not “only” people impacted by a disease, but also people with strength, hope and a fighting spirit.
These emotions were symbolized in the paper birds that had been made by children in the days before our meeting. Together with dozens of balloons, the birds sailed away to the sky – signalling hope, willingness to fight and a future for HD affected people.
The European Huntington Association wants to extend the collaboration with Russia and the meeting we had at the Orphan People Centre in Moscow is one of the most inspiring meetings we have ever participated in.
So how did we end up in Russia in the first place? A couple of months ago, we was contacted by Irhishka Horoslikova who told us she wanted to extend the network between HD impacted in Russia and other countries. Irishka is a strong and brave advocate for more openness regarding HD. She is one of few HD affected who talks publicly about how she deals with the disease.
In Moscow, Svein Olaf Olsen and I further talked about how people impacted by HD can get involved. We talked about Enroll-HD and the possibility for people to participate in research as there are five Enroll-HD sites in Russia. And we talked about why it is so important for family members to be engaged as the fighting HD spirit comes from the heart and not from a professional view.
In the Easter Meeting the CEO of Orphan People Centre, Marina Tretyakova, told about how the center works to engage people and support them. Mrs Tretyakova has formerly worked in art and culture and is therefore emphasizing the value of cultural aspects in different forms. The centre showed a film consisting of a photo exhibition where people impacted by HD had taken photos to express themselves.
The exhibition will be exhibited in many different Russian cities and I asked if some the photos could be exhibited during the EHA conference in Sofia in September.
Orphan People Centre had further produced a film about HD. It was a honest picture on how it is to handle the disease – with all its ups and downs. In it Irina Horoshlikova and her partner told their story: how they first fell in love, how they struggle for dignity and respect and how they want to live a good life even though the disease is a part of their everyday.
We left Moscow with a strong sense of the potential for a better future together. We need to unite and fight stigma and shame and let our needs be heard where decisions are made!
A lot of family members said that they wanted to contribute to make the association in Russia stronger.
It is already decided that there will be a new EHA/Russian meeting in the Autumn and a lot of family members will participate in the EHA Meeting in Sofia in September.
We are looking forward to see our friends again!