Looking back at 2016……
Looking back at 2016 I can honestly say it was a very busy year for AHC.
A couple of years ago I took together all the fundraising events around the world at the end of the year and I could easilly keep track of them all because they were not too many. This year there is no way I can do this because so many people are raising funds and so many events are ongoing.
This is of course wonderful to see and should result in more funding towards basic research on AHC which again takes us closed to our goal to find a treatment for this rare and complex disease.
Are we closer to our goal than we were this time last year?
The short answer is YES but perhaps not as close as we would have hoped for. Research was delayed because the labs all had the same problem. The mutated mice were not able to breed and they were dying prematurely which just shows us how complex and serious this gene mutation is. The labs seem to have overcome this obsticle and now have enough mice to start experimenting with potential molicules.
This is where things get interesting for the families because if the reserachers find a possible molicule that works with the mice then the families will have to participate in a drug trial soon. If the trial is successful then we might have a treatment option in a few years.
So where are we in regards to timeframe?
I would say the most positive outcome if there is already a molicule available that would work to restore the function of the sodium/potassium pump is that we could have a drug for AHC within 3-4 years.
If there is no available molicule and we have to create a new one then we would be talking about a timeframe of 10-15 years before we have a drug on the marked, this is given we get enough funding to produce it.
What is going on in 2017?
Its exciting to reveal that on International AHC day 18th of January 2017 we will launch a new website dedicated to the documentary Human Timebombs
The full film will be available in 10 languages on the site www.humantimebombs.com
We are going to need YOUR help in making to announcement heard all over the world and to do that we created a Thunderclap which we hope you can participate in and become a SUPPORTER. For more information click this link http://thndr.me/i14sej
It is our hope that by making Human Timebombs public the film will help families all over the world to get more understanding from people in their community. We also hope that more children will get diagnosis because of the film and that we get more doctors and reserachers interested in helping the AHC community find a treatment for this important disorder.
I wish you a happy new year
Sigurdur Holmar Johannesson