Wearside charity and its fightback from a devastating fire is spotlighted in new documentary film
‘We provide a sense of community to those affected by these devastating rare conditions’
A Wearside charity’s fightback after a heart breaking fire at their headquarters has been turned into a film.
The journey of NPUK, a small North East charity supporting families affected by the ultra-rare genetic condition Niemann-Pick disease, has been documented in a new production called “Never Heard of It”.
It tells the story of the charity’s tireless work to raise awareness for a condition so rare that most people have “never heard of it”.
It also captures their remarkable resilience following the devastating blaze that destroyed their Washington office in September 2025.
John Lee Taggart is the writer, director and producer of the film, produced by NPUK & Apprentice Films. His own daughter Cora Lily featured in a previous film by the charity, which was a comedy production all about new-born screening and rare diseases.
He said: “We provide vital support, information, advocacy, and a sense of community to those affected by these devastating rare conditions.”
Speaking just after the fire, he said: “We have been in operation for 34 years and it is going to be really hard to recover.”
But NPUK has battled hard to recover and speaking about the latest film, he said: “Never Heard of It follows the journey of the small rare disease charity Niemann-Pick UK (NPUK) in a way you've likely never seen before...blending hard-hitting documentary with deranged daftness in equal measure.”
Niemann-Pick diseases can affect both children and adults: They are caused by a lack of the enzyme acid sphingomyelinase and they lead to a build-up of toxic materials in the body.
To find out more about the diseases, visit https://www.npuk.org/