Over the weekend of June 5–7, 2026, 10 people living with Friedreich’s ataxia from five countries—the Czech Republic, Slovakia, Austria, France, and the United States—gathered for the very first international FAntastic meeting.
The meeting took place in Vienna and was organized by FARA’s Czech ambassador, Tomáš Pik, in collaboration with the Austrian patient organization FAu, and FARA’s Austrian ambassador, Jakob Mitterhauser, who played a key role in preparing the program and welcoming the participants.
On Friday, there was a “Welcome Dinner,” on Saturday the group visited Belvedere Palace among other things, and on Sunday there was a walking tour in Vienna’s city center.
For me, this event represented an important milestone. Since 2024, I have been organizing FAntastic meetings several times a year in various cities throughout the Czech Republic. These meetings were created with a simple goal: to help people with Friedreich’s ataxia meet face-to-face, share experiences, and realize that they are not alone.
Online meetings are valuable, but nothing can replace getting together in person, having open conversations, and understanding each other without having to explain what it means to live with FA.
The meeting in Vienna proved that this idea works not only on a national level but also on an international one. Thanks to the beautiful weather, the group enjoyed the sights and the city’s vibrant atmosphere, including local festivals and opportunities for casual conversations and making friends.
Although our languages, cultures, and healthcare systems may be different, our daily challenges are often remarkably similar.
Personally, I see the global FA community as one big family spread across the world. My dream is to connect as many of our “brothers and sisters” as possible and help forge stronger international bonds among patients, families, and organizations.
The success of this first international gathering has inspired me to make it an annual tradition. My next goal is to host the next International FAntastic Meeting in Prague in 2027 and welcome participants from even more countries.
I have a wider vision for the future. I would like these meetings to evolve into events with a stronger charitable and awareness-raising component.
Funds raised through future activities could help cover travel, accommodation, and assistance costs for participants who otherwise would not be able to attend.
In the long term, I hope that such initiatives could also contribute to supporting research and development of new treatments for Friedreich’s ataxia.
Of course, achieving this vision will take some time. We must proceed step by step.
Written and edited by
Tomáš Pik with Jakob Mitterhauser
