For Jakob. And for Michi. Why I support AHC Austria

There are people you share kilometres with, rather than meetings. Michi is one of them. We have been friends for many years, spending countless hours together on trails and in the mountains: at sunrise, in the rain, during conversations that only happen when you run side by side for long enough. After that many metres of climbing together, you know what makes the other person tick. And when a friend like that needs help, you go alongside them.

Shared kilometres, shared summits: days like these stay with you long after you leave the mountain.

One in a million

Michi’s younger son Jakob was born in January 2023. A genetic test later identified a spontaneous mutation in the ATP1A3 gene. Among other conditions, it can cause alternating hemiplegia of childhood (AHC), an extremely rare neurological disorder. There are currently five known cases in Austria. Episodes can happen at any time, triggered by things we take for granted: noise, heat, excitement. There is no treatment for the underlying cause. Not yet.

What Michi and Verena have done with this situation moves me deeply. They founded a charity. AHC Austria supports research into the ATP1A3 mutation, connects affected families and works to make rare diseases visible. Their first goals are concrete and modest: attending the international ATP1A3 symposium in Paris and funding RNA sequencing, together costing less than €10,000. It is both heartbreaking and motivating to see how much research depends on so little money when a disease is too rare to attract industry interest.

What I can contribute

My Smarter Business team and I built the charity’s website. We run and host it free of charge so that every donated euro supports the charity’s work, rather than infrastructure. At ahc-austria.at, you can find Jakob’s story, accessible information about AHC and the donation account with a QR code.

Personally, I have donated, and I will keep helping: At my talks, I will raise awareness of AHC Austria and collect donations. If I organise another charity run, like the time I ran from Vienna to Copenhagen to raise money for children with epidermolysis bullosa, I already know the cause. I will run for Jakob and ATP1A3 research.

What you can contribute

Honestly, even two minutes can help. Read Jakob’s story. Share the website with people it might touch. If you would like to, donate. With goals on this scale, every contribution makes a direct difference. The progress bar even shows what your donation has helped achieve.

Sometimes #lifeworktrailbalance is exactly that: the kilometres you run for someone else.