Newsletter May 2008

 

 

Dear friends,

 

What a wonderful time of the year! Here in southern Sweden Spring has really arrived with all the trees being bright green, fruit trees and bushes in blossom and the temperatures being a little more pleasant. I just love this time of the year. My dystonia also seems to be a little better during the warm seasons of spring and summer.

 

I am very happy to be writing to all of you. As you know from the newsletter of April the Board has now decided to send out a monthly newsletter. We feel like we would like to be in more contact with you and we hope that this will give us more regular feed-back from you our national group members. We also encourage you to circulate this monthly newsletter within you country in order for your members to know and understand what is going on on the European level.

 

End of April we had our second board meeting of this year in Brussels. We brought up a few things that I would like to share with you:

 

Member list

Please let us know if there are other individuals from your country who would like to be put on this monthly e-mail circulation list. Maybe all the members of your board would like to have it? Please let Philip Eckstein know these extra names and he will add them to the list.

 

Member group size

Being the new President of EDF I think it would be very interesting to find out how many members we have all over Europe. We are 18 national groups being members of EDF but how many members does each national group have? Please reply to this email to Philip Eckstein and he will collect the information.

 

Funding of European Dystonia Week

The board agreed that the emphasis of a single Pan-European week should be moved towards supporting each member country to undertake some awareness raising activities at some time during the year, the duration of activities to vary as appropriate to each specific country. From 2009 onwards three awards of Euro 500 will be made to the countries who carry out the best awareness raising projects. Applications for these should be made by end of November 2008.

 

Dystonia Europe 2008

We need all the help we can get in marketing the Dystonia Europe Conference in Hamburg. We encourage you to publicise the D-E-2008 by having a link on your web-site together with  despatching the brochure to local neurologists. Please let us know how many brochures you need and we will send them to you.

 

GA 2008 in Hamburg

Our annual EDF meeting/general assembly will be held alongside the Dystonia-Europe Conference in Hamburg. Mark already now in your calendars October 17th from 3 pm through October 19th at noon. Specific details of program, meals, events will be sent out to you soon.

 

Board member election

At the next GA there will be three vacancies on the board: Vice President, Treasurer and general board member. The desire is to include more member countries on the Board. Invitation for nominations will be sent out by end of July but as we all now this process is quite time-consuming and by letting you know already now we hope to get plenty of nominations.

 

Dystonia Day – Dystonia Week

Please let us know whether you have had some Dystonia Awareness rising activities so far this year in your country. Maybe one national group did something that can inspire another national group?  Our intention is to publish such events/reports on our web-site now when we have left the summer issue of “Update”.

 

This will be all from me for now. I hope you will all have a wonderful summer with lots of beautiful days and plenty of time for relaxing.

 

I am looking forward to seeing you all in Hamburg in October.

 

My warmest regards

 

 

 

Monika Benson

President