The year started with a bang because on International AHC day 18th of January 2017 we will launch a new website dedicated to the documentary Human Timebombs The full film was made available in 10 languages on the site http://www.humantimebombs.com
It is our hope that by making Human Timebombs public the film will help families all over the world get more understanding from people in their community. We also hope that more children will get diagnoses because of the film and that we get more doctors and researchers interested in helping the AHC community find a treatment for this important disorder.
For the families however not much happened to make their life easier in 2017, no new treatments and no discoveries that make them hopeful that they will see a cure in the near future.
We cannot stop fighting though because if we do there will of course never be a treatment for our kids.
We will have to do better, push harder, get more funds and raise awareness so that people will understand how important AHC is, not just for us parents that live and breath this disorder every day but for the world.
The world has to understand the this disorder is the key to finding treatments for many more neurological conditions that will in the end help millions of people all over the world.
Let´s make 2018 OUR year and find a treatment that will improve quality of life for our AHC families.
HAPPY NEW YEAR
Sigurdur Holmar Johannesson
AHC Federation of Europe
Here is a shortlist of what happened in 2017 for AHC, apart from these publications and events lots of fundraisers were held and new research programs were funded.
• In January the documentary Human Timebombs was released to the public on the website http://www.humantimebombs.com
• In February an article about Diagnosis and Treatment of Alternating Hemiplegia of Childhood was published in Springer: https://link.springer.com/article/10.1007/s11940-017-0444-7
• In April a summary from the International AHC task force was released in Neurology: http://ng.neurology.org/content/3/2/e139.full
• In May an article was released: A novel SLC2A1 mutation hemiplegic migraine with alternating hemiplegia of childhood
• In June it was announced that 4 AHC associations funded the INTERNATIONAL AHC REGISTRY
• Also in June
Sho Yano MD PhD and Kenneth Silver MD published this article:
Alternating Hemiplegia of Childhood: A Physicians’ Guide for Diagnosis http://www.raredr.com/news/ahc-guide-diagnosis
• in September the 6th Symposium on ATP1A3 in Disease took place at the Palace Hotel Tachikawa in Tokyo, Japan.
• 2018 Symposium on ATP1A3 in Disease will take place at the Northwestern University Medical Center, Chicago, Illinois USA on October 13th and 14th (Saturday to Sunday)