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SMAIreland.com is a new website to support sufferers of Spinal Muscular Atrophy and their families in Ireland

What is SMA anyway?

SMA (spinal muscular atrophy) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.

SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and often fatal muscle weakness.

Learn more about SMA

#SpinrazaNOW campaign and how you can help...

#SpinrazaNOW is a campaign to ensure the Irish Government make the breakthrough Spinraza drug treatment available to Irish SMA sufferers.

Send a letter...

We’d love if you would send a letter to your local politicians asking them to intervene with the Minister on behalf of all SMA sufferers. Please ask 3 or 4 of your friends to do it too.
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Every little helps…

Make a video...

For some people making a video is an easy thing. If you’re one of those people please take the time to create a video asking Minister Harris and the HSE to make Spinraza available NOW for people with SMA.
Be a star for SMA

Sign the petition...

We’d love if you’d sign this petition put together by parents of a child with SMA. Tag it #SpinrazaNOW and share it on your social accounts. Help us sway this government into making this drug available and changing the lives of SMA sufferers.

Latest News & Updates

SMA Ireland Day of Action on Spinraza – World Rare Disease Day, Feb 28th 11am

SMA Ireland are planning a Day of Action at Dáil Éireann on Thursday 28th February,…

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SMA Ireland Statement on Latest Developments in HSE-Spinraza Scandal

SMA Ireland is today deeply concerned at the ongoing conduct of the HSE and Government…

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[Virgin Media News] Minister Simon Harris responds to #SpinrazaNOW campaign

Minister Simon Harris saying that the issue with Spinraza availability does not only lie with…

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[Irish Mirror] Irish mother pleads with government to approve ‘miracle-drug’ that could save her son with life-threatening disease

An Irish mother has made an emotional plea to Health Minister Simon Harris and the…

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[Herald] ‘Don’t let these kids die’ – Protesters take drug fight to the Dail

Health Minister Simon Harris has been told his decision on whether to grant access to…

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[Independent] Plea: Decision on drug approval is ‘life or death’

Health Minister Simon Harris has been told his decision on whether to grant access to…

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[RTE] Coverage of #SpinrazaNOW event: Call for funding for ‘life-changing’ drug

Campaigners have called for State funding for Spinraza, a 'life-changing' drug used in the treatment…

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[Virgin Media News] Report on #SpinrazaNOW Campaign for SMA Sufferers

Virgin Media report on the #SpinrazaNOW campaign at Leinster house today. SMA sufferers travelled from…

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Statement by Lorraine O’Malley at the #SpinrazaNOW event at Leinster House – 20 Sep 2018

This statement was read outside the Dáil by Lorraine O'Malley, mother of Grace O'Malley a…

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Event: #SpinrazaNOW at Dáil Éireann – Thursday 20th September – 11am

The #SpinrazaNOW campaign will be at Leinster house on Thursday 20th of September at 11am.…

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[Galway Bay FM] Keith Finnegan Show Galway Bay FM – Karen Mannion on her brother Gearóid’s stories, SMA and Spinraza

Karen Mannion talks about her brother Gearoid P. Mannion who had SMA type 2 and…

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The Long-Lost Short Stories of Gearóid P. Mannion

A great story about a collection of essays and short stories written by a Clifden…

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Real stories, from real people with SMA

Coming soon…