Third ATP1A3 Symposium, Lunteren


The ATP1A3 Symposium was a great success and this year 83 people participated. The location was beautiful Lunteren, The Nederland’s.
Since the film crew was quite busy filming and doing interviews and we were helping we were not able to grasp all the information that was presented at the symposium but the atmosphere was very positive and it was obvious that all the participants had high hopes finding a treatment to enhance the quality of life for all AHC champions and their families.

Today there have been reported 52 different AHC mutations in ATP1A3 (last year to total number was just over 20) and 67 mutations in ATP1A3 have been reported to cause a wide range of neuropsychiatric disease

There are now 3 diseases that have been reported to have de novo mutations in ATP1A3: AHC, RDP and CAPOS.

AHC and RDP share 2 mutations and hopefully that will be a new puzzle that the researchers can add to the big picture.


The AHC parent evening was a great success where Filippo Franchini and Jeff Wuchich did a great job of moderating discussions about various AHC related matters.


The parents were able to meet for a conversation after the dinner on Friday to discuss matters of the heart which was very important.


We were also lucky enough to meet 2 AHC champions at the symposium, Małgorzata Szufa, from Poland and Indy Lentze from Holland.



At the AHC parent evening the film crew previewed a small sample of the material we already have for the AHC Documentary.

The sample was well received and started some conversations both that night and during the remainder of the symposium.


It is so great to have the whole AHC society behind the project and it makes all the work worthwhile.

The film crew still looking for more videos of AHC champions both at their best and at their worst. If you would like to contribute or if anyone in your country would like to send them your videos please use and send the material to

The AHC film crew did 10 great interviews in 2 locations. The persons interviewed were:

Tsveta Schyns, Tom O´Brien, Jan Koenderink, Filippo Franchini, Arn M.J.M van den Maagdenberg, Rosaria Vavassori, Sona Nevsimalova, Steven Clapcote, Elwin Lentze, Nienke Lentze and Brian Neville.



The film crew now has more than 40 interviews and are looking forward to the next locations which are Vanderbilt university hospital and Duke University hospital in the United States.

Sigurdur Johannesson

Ragnheidur Hjaltadottir