Will we find a cure for Alternating Hemiplegia in 2012?
We have all the capabilities to at least find the cause of Alternating Hemiplegia. In the last years and especially in 2011 we have laid the foundation to make 2012 a major stepping stone for Alternating Hemiplegia. With leading associations like AISEA, AFHA and the AHC foundation making a decision to collaborate and coordinate their efforts it will surely lead to a good result.
These associations work with the force of much larger associations with the goal of finding a cure for our children. The bulk of the work lies with only a few individuals that live and breath Alternating Hemiplegia and we owe these people a lot of gratitude.
In 2011 these associations started the search for the defected gene that causes Alternating Hemiplegia and by the end of the year an international group of genetists decided to join in a workgroup that will take all the data from the genome sequencing and analize it to find the defect. These are the people we are really counting on to get us to the next stage.
If we are in luck and find the defected gene hopefully there is already a drug out there that can countereffect the defected gene and make the episodes seize. That would be the perfect solution but it is a very far fetched dream.
It will take a lot of effort for us to go to the next step and we will need considerable funding to finish this task but I believe we will succeed if we keep faith and work hard as we have done these last years.
Until now we have put most of our trust in small donations but in 2012 we will have to set our goal higher and aim for bigger companies to get the funding we need. We can do this by making them believe (as I do)that they can have REAL impact in finding a cure for this rare disease.
The goal is clear and the path is paved, now we only need the stars to align for us and 2012 will be the year that we who live with Alternating Hemiplegia will always remember.
Sigurður Hólmar Jóhannesson
President
AHC association of Iceland