Friday, 18 September, the first ever Huntington meeting will take place in Iceland. The meeting can be attended both online and in person, and it is open to everyone who understands Icelandic. Here is an interview with the woman behind the meeting:
– To start off: What is your name and what is your role in this meeting?
Vigdis Stefansdottir. I am a genetic counsellor at Landspitali National University Hospital in Reykjavik Iceland. As a board member in the Icelandic Human Genetics Society and a genetic counsellor, my role is first and foremost to initiate a Huntington support group in Iceland. It will hopefully lead to a fully form Society later.
– This is the first Huntington meeting in Iceland. Why is the meeting taking place now and did it require a lot of effort to put together?
The meeting is taking place now because of a communication between one of our doctors and an interested party. The doctor asked if we could and would help initiate the support group which translated into a meeting. The effort is still to be seen. The European Huntington Association has offered assistance in broadcasting the meeting which will also be held in a meeting hall at the Hospital. I have found all I contacted to react positively to the idea and to requests of giving a talk.
– How many people will participate?
I have no idea and as the meeting will be both in house and online it is even more difficult to envision. I hope for at least 50.
– What are the aims of the meeting?
The aims are to educate the public and those living close to anyone with Huntington about it and to show support to both families and patients.
– What are your hopes for the future regarding Huntington’s disease in Iceland?
Raising awareness for Huntington disease, lessen any possible stigma, having a strong society that supports the members and addresses their needs both physically and emotionally.