Spinal Muscular Atrophy Ireland Foundation, commonly known as SMA Ireland, is the representative organisation for people with SMA and their families in Ireland. Its purpose is to raise awareness of issues concerning people with SMA, fund research and trials into the efficacy of treatments in cohorts beyond initial trials, lobby for the speedy adoption and funding of new treatments after approval and help provide services and support to people with SMA and their families.
SMA Ireland was setup in late 2018 to help co-ordinate efforts to persuade the Irish Government to fund Spinraza, the first ever approved treatment for Spinal Muscular Atrophy.
The #SpinrazaNow campaign was resisted forcefully by the Government and HSE but after overwhelming public and political support Spinraza was approved for under 18s in April 2019 with treatments to start in June 2019.
The future for SMA Ireland is bright, we live in an unprecedented time for those with SMA. Spinraza the first treatment ever for SMA using a spinal injection being available across the world and now the one-off gene therapy ZolgenSMA also receiving approval in the USA, with an oral treatment from Roche also expected to be available soon.
Our role in these developments is clear. We must, in as timely a manner as possible, do everything we can to ensure the people in Ireland with SMA have access to the very best treatment for them, whatever that may be. In addition we have a role to inform the public, medical community and legislators, what the issues really are around SMA and how the condition impacts people with SMA, their families and the wider community.
We hope you can help support us in this work.
Now that you know about us, perhaps you should meet us