Sunderland charity raising awareness for rare illness with the help of Lord of The Rings star Billy Boyd
A Sunderland charity which supports people with a rare disease is raising awareness for the invisible illness with the help of some famous faces.
Niemann-Pick UK (NPUK), based in Washington, is developing a short animated film titled ‘Invisible Manners’, to tell the stories of families and patients they support who suffer from Niemann Pick Disease.
The project is being supported by Lord of The Rings star, Billy Boyd, who famously portrayed Pippin Took in the fantasy film trilogy as well as comedian Isy Suttie and actors Ralf Little and Weruche Opia.
NPUK supports those affected by the devastating group of genetic conditions known as Niemann-Pick Disease (ASMD NPA/NPB, and NPC), which are ultra-rare and severely life limiting.
Niemann-Pick diseases affect both adults and children and are caused by a lack of the enzyme acid sphingomyelinase leading to a build-up of toxic materials in the body.
John Lee Taggart, a former St. Aidan’s Catholic Academy student, is taking the reins of both writer and director for the film and has been the Communications & Campaigns Manager for the charity for just over five years.
He said: “COVID-19 really set back development as our main focus during that time was to make sure everyone stayed safe, as lockdowns were particularly difficult for the most vulnerable in the community. Later we used Zoom to continue talking with the families to learn of both their challenges and inspirational moments.”
The animation of Invisible Manners will aim to provide representation of Niemann-Pick Type B, which is often considered an “invisible illness” as the symptoms are not always obvious.
In the UK, there are approximately 13.9 million people living with a disability, but only a small percentage have illnesses that can actually be seen.
The film will also feature music for the Sunderland born band Lilliput, fronted by Joe Collins Jamie Gilling, Johnathan Hibbert, Jordan Miller, Joshua Hawick, and Daniel Waterston.
Invisible Manners is set to be ready for release in mid-November of this year. For updates surrounding the project, including ways in which you can support Niemann-Pick UK, follow @NiemannPickUK on Facebook, Twitter, and Instagram.