Today curespg52.com goes live, in English, as a first version.
What is here. A plain-words explanation of what SPG52 is, with every number linked to the paper it comes from. A practical plan for the first 90 days after diagnosis. An honest, stage-by-stage picture of where gene therapy stands for the four AP-4 conditions. The research and resources families and clinicians ask about most. A map of the families who have come forward, by country and age band only. And the two ways to give to the one gene therapy program for SPG52.
What is being confirmed. A few details on the donate page (the exact card-processing fee and the fiscal sponsor’s tax ID) are marked as pending until they have been checked against the paperwork. Family foundations in Spain, Romania, Poland and Germany will be listed once each has approved its entry.
What comes next. Translations, starting with the languages of the families in the group. Each one goes up only after the English has been reviewed. If you can help translate or review, write to us.
Who runs this. Parents. We are not the research team, and nothing here is medical advice. For the gene therapy program’s official status, the UAB page is the source of truth.