Calls for SMA screening ignored before Jesy Nelson campaign, say families

Following Jesy Nelson's public announcement about her twins' SMA1 diagnosis, calls for newborn SMA screening gained national attention, prompting a response from Health Secretary Wes Streeting. However, families affected by SMA express frustration, stating their prior appeals for government action on this issue were largely ignored for years. Advocates, like Portia Thorman of SMA UK, whose son has SMA1, have campaigned extensively for newborn screening, even inviting Streeting to a pilot study, but felt their concerns were dismissed due to the disease's rarity. Amy Moffatt, another parent of a child with SMA1, highlights the years of advocacy preceding Nelson's announcement, emphasizing the pain of needing a celebrity platform to finally bring awareness to the urgent need for screening. They believe earlier screening and treatment could significantly improve outcomes for children with SMA1.

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