Last updated: December 2025

Ollie

SMA UK worked closely in collaboration with Havas Life London, to produce a short film emphasising the urgent need for Spinal Muscular Atrophy (SMA) to be included to the UK Newborn Screening (NBS) programme.  

Watch this emotive short film where 4-year-old Ollie shares the things he’ll never get to do because SMA wasn’t included in the newborn screening test when he was born. SMA is rare and irreversible, but early diagnosis and treatment can change everything.

Amelia

My name is Amelia. I am 16 years old and I have had SMA type 2 all my life. My sister Lena has SMA too, but she was diagnosed at birth and has had a gene therapy which hopefully will prevent the progression of the disease.

Portia and Ezra

Portia’s son, Ezra has SMA type 1. Their journey highlights the importance of new born screening and how it could transform the lives of those living with SMA in the future. This short film, made when Ezra was aged 5 years, was part of Rare Disease Day 2022 when Genetic Alliance UK partnered with ITN to produce ‘Shining a Light on Rare Conditions’, a news-style programme raising awareness of people affected by rare, genetic, and undiagnosed conditions.

Eden

Eden, who has SMA Type 3, and her mum describe more about how the condition affects Eden, their experience of diagnosis, and how newborn screening could change the lives of others like theirs:

Teddy

Neil talks about the short time his family had with their son Teddy who had SMA Type 1, and why he supports pre-symptomatic screening and treatment for SMA.

Ollie

Ben describes his family’s journey to diagnosis and treatment for son Ollie who has SMA Type 1 and the difference pre-symptomatic screening and treatment would make.