About SMA Ireland

SMA Ireland is the collective voice for the adults and children in Ireland with Spinal Muscular Atrophy

Our Goals

Established in 2019, SMA Ireland is a voluntary organisation dedicated to raising awareness of Spinal Muscular Atrophy in Ireland and campaigning for access to treatment for all. Time is a critical factor when treating SMA, so one of our top priorities is the introduction of SMA to newborn screening in Ireland.

Supporting those lives affected by Spinal Muscular Atrophy by sharing knowledge, raising awareness and accessing treatment until a cure is found.

Our goals:

Support families by providing information and a network of contacts

Raise awareness and campaign for the disease to be part of Rare Disease screening

Lobby for access to treatment and care

Serve as a liaison between pharmaceutical companies and patient families

Promote ongoing research and coordinate patient volunteers

Initiate and maintain connections with the major international SMA organisations

Meet the team

SMA Ireland relies on the support and dedication of friends and family in order to meet our objectives. This effort is headed by the SMA Ireland Board of Directors:

Chair of SMA Ireland

Karen Mannion

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Director of SMA Ireland

Professor Emmeline Hill

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Director of SMA Ireland

Jonathan O'Grady

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Director of SMA Ireland

Paul O’Malley

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Director of SMA Ireland

Shane Whelan

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