Spinal Muscular Atrophy Ireland Foundation CLG

Spinal Muscular Atrophy Ireland Foundation Company Limited By Guarantee is the national voice for individuals and families affected by spinal muscular atrophy (SMA) across the island. The charity champions awareness, advocacy and support, working to ensure that every person with SMA has access to timely diagnosis, appropriate treatment and the information they need to navigate the health-care system.

Key initiatives include a strong push for the inclusion of SMA in the newborn heel-prick screening programme, highlighted through a dedicated podcast that calls for swift implementation of the test. The organisation also runs an Information Hub, offering practical guidance for families when a child is hospitalised and linking them to essential services. Through active social-media engagement, SMA Ireland raises awareness of policy issues such as adult access to SMA medicines, campaigning for equitable, age-independent treatment pathways.

By uniting the SMA community, providing up-to-date resources and lobbying for systemic change, the foundation plays a vital role in improving the lives of those living with this rare neuromuscular condition.