As many of you know, in late 2023 our 7-year-old son Toby was diagnosed with De Novo ZNF292-relayed syndrome, an incredibly rare neurogenetic disorder. He’s currently one of just 100 people worldwide to have received this diagnosis.

Given how new/rare ZNF292 is, we’re unable to find answers to the many questions we have, so we're promoting Toby's diagnosis to raise awareness, as well as money to fund support for those affected by rare genetic disorders, like ZNF292.

From 8th July 2024, Sheena (Toby's mum) will kick off The ZNF292 Day Challenge. Having never run before, she'll run 5km each day, for 292 consecutive days, ending on 25th April 2025; day 292.

We’ve selected Unique as our chosen charity; they support those affected by rare chromosome, or single gene disorders, helping unique people, like Toby!