This week marks an important milestone for the SMA community in Ireland, as the Irish Pharmaceutical Healthcare Association launches its 2025 Innovate for Life campaign. This is a national awareness initiative supported by Novartis that shines a spotlight on Spinal Muscular Atrophy and the vital importance of newborn screening.
https://www.youtube.com/watch?v=BKy4vxysJHc
SMA Ireland is proud to have taken part in this campaign, which features a powerful short film telling the story of a family with two children affected by SMA, as well as a podcast episode recorded earlier this year with SMA Ireland, SMA Europe, and parent advocate Brona Noonan. The discussion explores how early diagnosis and access to treatment can transform lives, and why Ireland must now urgently implement SMA in the national heel prick test.
A Moment for Action
In November 2023, the Minister for Health announced that SMA would be added to Ireland’s national newborn screening programme, a decision based on clear scientific and ethical recommendations from the National Screening Advisory Committee and HIQA. Yet, almost two years later, no baby in Ireland has been tested for SMA through the heel prick test.
Every year, around six babies are born in Ireland with SMA. Without early detection, these babies face unnecessary delays in diagnosis and treatment. For SMA, time is everything: early identification can mean the difference between walking and using a wheelchair, or between breathing independently and requiring lifelong ventilation support.
Raising Awareness, Driving Change
The Innovate for Life campaign highlights the human stories behind these statistics and the urgent need for implementation. It brings together industry, advocacy, and clinical voices under one shared goal: ensuring that every child in Ireland has the chance for the best possible start in life.
How You Can Help
We encourage everyone to help spread the word by sharing campaign content and engaging in the conversation online. Together, we can keep the momentum going and make sure SMA screening is delivered without further delay.
At SMA Ireland, we will continue to advocate for action, working with Government, clinicians, and the broader rare disease community to ensure that every baby born in Ireland is screened for SMA and given the chance to thrive.
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