The UK currently screens newborns for just 9 rare but serious conditions whereas the USA tests for up to 59. Local filmmaker John Lee Taggart hopes to create conversation and progress surrounding this issue with his upcoming comedy short, “A Rare Find”, which features narration from Peep Show’s Robert Webb.
A Rare Find follows a young struggling couple as they contend with the thrills, spills, and exhaustion which often accompanies life with a newborn baby. Dad, (Jack Robertson, Where It Ends, BBC iPlayer, & Metroland Comedy), and Mam (Chantelle Taggart), initially decline the blood spot/”heel prick” test on behalf of their child…but as the months roll on and their challenges continue, clearly something is wrong with Baby (Cora Lily Taggart) and they eventually reconsider.
The film was created on behalf of The Newborn Screening Collaborative. John Lee Taggart, Head of Communications at rare disease charity Niemann-Pick UK (NPUK), wrote and directed the film targeting it squarely at the broader public with the humour elements hoping to provide a softer introduction to the subject to amplify empathy, understanding, and advocacy for rare families.
John writes: “…the film is in parts hilarious which is not something most would expect on this subject I’m sure! But Rob’s narration led us to leaning into the humour, rather than trying to work against it, and what we now have is something which I truly believe will help spread the charity’s message. The film is packed with information on this too often overshadowed subject, but due to the comedy and relatability of the characters…well I am hoping people tune in rather switch off…and that they finish watching wanting to get behind the campaign.”
The Newborn Screening Collaborative
In 2020 ArchAngel MLD Trust brought together 13 principal rare disease patient organisations (which has since grown to 16, and counting) in order to form a new UK collaborative effort, which would be later referred to as The Newborn Screening Collaborative, representing over 500 rare diseases and thousands of patients. The groups seek to work together for positive change within newborn screening in the UK and this year they announced three main priorities they would focus on, which included; Review of UK NBS policy and processes, review of existing and pipeline sources of evidence, and political engagement.
"The proof is in numbers. You come together as a collaborative and the voice gets heard more.”
Bob Stevens, CEO of the MPS Society & Chair of the Newborn Screening Collaborative
The short film is just one part of a broader campaign by The Newborn Screening Collaborative to push the subject of screening and to work towards positive progress within the current UK screening programme. Earlier this year an explainer animation was released to explore the basic history of the blood spot (“heel prick”) test and explain the motivation behind the Collaborative’s efforts, interviews with charity leaders and advocates have also been recorded to give deeper insight on the subject, and an accompanying documentary short film (also narrated by Robert Webb) is scheduled for release in early 2024. Watch this space!
A Rare Find is set for release on November 5th 2023. You can follow along and support the campaign at the group’s Facebook page, @NewbornScreeningCollaborative