In the beginning of last year we said our main goal for the year 2012 was to get to the core of Alternating Hemiplegia of Childhood and find the cause of the disease. This was accomplished 18th of February by Duke and announced 29th of July so we can say that we succeeded to accomplish our main goal.
I will now go through the stepping stones of this year:
February:
We sent out 120+ letters to Icelandic companies asking for financial support. We received 3 positive answers from: Toyota Iceland, Rolf Johanson and Landsnet.
March:
The first formal international video conference was held and many more after that.
The Vaccines supported AHCAI
1 in a million campaign was lunched in the US
April:
Dr. Solveig Sigurðardottir help us translate AHC in Icelandic
May:
SJ speaks at Nordic rare disease conference in Hilton Reykjavik
Front page article in Fréttatíminn
Svölurnar decide to support AHCAI
June:
AHC association of Canada opens it´s webpage
SJ attends Eurordis Summer school in Barcelona
July:
29th July article published in Nature Genetics about the discovery by Duke University on the mutated gene ATP1A3 that causes AHC
SJ and VSS attend the AHC Foundation family meeting in San Francisco.
August:
Reykjavik Marathon a huge success and Viktor Snær collects the most pledges out of 3334 runners, Svölurnar helped us alot during the marathon.
September:
A dear friend of Sunna´s family, Særún Harðardóttir, decided to celebrate her 40th birthday by hosting a concert where family, friends and others could celebrate music and donate to Sunna´s fund.
October:
Dominique Poncelin and Dr. Swoboda join the Japanese AHC association in Tokio
November:
Svölurnar host a charity market for Sunna Valdís at Natura Reykjavik hotel.
Ágústa Fanney puts together a video about Sunna Valdis and AHC. The video in found on our homepage www.ahc.is and in Icelandic
Gunnar Gunnarsson supports AHCAI by asking his friends to support AHCAI instead of giving him a gift for his 40th birthday.
December:
Svölurnar present financial support to AHCAI
ATP1A3 symposium in disease held by ENRAH and Duke University in Brussels.
SJ presents „the parents view“ at the Symposium
Einar Mikael magicial hosts a magic show in Háskólabío, Reykjavik and presents financial support to Sunna Valdis.
Landsnet supports AHCAI
By this list I am only gliding through the year, there were many more very interesting events but the key point is that the AHC association has left a mark on the Icelandic society last year and will hopefully continue to do so this year.
We deeply thank everyone that supported us this year but especially Svölurnar who took us by the arm and led us through the last months of the year.
Sigurdur Hólmar Jóhannesson
President
AHC Association of Iceland