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What is the #SpinrazaNOW Campaign?

The #SpinrazaNOW campaign is a campaign to ensure that the revolutionary drug Spinraza is available to Irish SMA sufferers through the HSE.

This drug is to date the only approved treatment for Spinal Muscular Atrophy and is a lifeline to those suffering form this degenerative disease.

SpinrazaNOW
SpinrazaNOW
SpinrazaNOW
SpinrazaNOW

What you can do right now...

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.

Use our Facebook Photo Frame

Use our Facebook Photo Frame to show your support until we ensure this drug is available to everyone with SMA.

Follow us on Social Media

#SpinrazaNOW Updates

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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