Some projects are not measured in story points but in what they can set in motion. This is one of them.
Jakob is the son of a long-time friend of our founder Florian. Born in January 2023, he is – as far as one particular gene mutation is concerned – one of a million: a spontaneous change in the ATP1A3 gene can cause, among other conditions, Alternating Hemiplegia of Childhood (AHC), an extremely rare neurological disorder. Only five cases with this mutation are currently known in all of Austria. No disease-modifying therapy exists to this day – and because case numbers are so small, the pharmaceutical industry has little commercial interest in the research.
That is exactly why Jakob’s parents founded the non-profit association AHC Austria: to fund research, connect affected families and raise awareness of rare diseases. Their first goals are concrete – from joining the European umbrella organisation AHC Europe to attending the international ATP1A3 symposium in Paris and funding an RNA sequencing analysis together with an Austrian research group.
Our contribution: technology, operations and hosting
When Michael told us about the association, the decision took us about a minute: we’ll take care of the website. The design and content came from the association – we turned them into a modern, bilingual website and operate it as technology partner, hosted free of charge in our Azure, for the long run.
A few technical details for those who know us and want the specifics:
- Astro as the static site framework – the site is fully pre-rendered, loads fast and needs no server in the classic sense.
- Content as Markdown and YAML with schema validation: the association maintains funding progress, goals and copy themselves – a faulty commit simply never goes live thanks to build-time validation.
- GitHub + Azure Static Web Apps: every push is built and deployed automatically, and pull requests get their own staging environment for preview.
- Privacy by default: self-hosted fonts, no cookies, no tracking, no third-party requests.
For us, this is everyday technology. For a volunteer-run association, it is the difference between “we really should” and a professional platform that can actually collect donations.
Why we are telling this story
Not to pat ourselves on the back – but because visibility is half the battle for rare diseases. Around 30 million people in Europe live with a rare disease, and very few of them have a lobby.
If you are reading this, you can help in one minute: visit ahc-austria.at, read Jakob’s story – and if it moves you, donate or share the page. Every contribution goes directly into the association’s purposes; the board works entirely on a voluntary basis.
