Niall Dennehy 04/12/2023 Niall Dennehy 04/12/2023

Newborn babies to be tested for Spinal Muscular Atrophy from next year – a victory for our community!

We are really pleased to share the good news that Spinal Muscular Atrophy (SMA) has been approved for inclusion in Ireland's National Newborn Bloodspot Screening Programme, commonly known as the heel prick test. Approval of SMA is a massive milestone for the community and overall progress of newborn screening in Ireland. It is particularly valuable because new treatments have become available for SMA in recent years with the potential to significantly improve outcomes through earlier diagnosis and treatment.

Niall Dennehy 22/11/2023 Niall Dennehy 22/11/2023

Green Paper on Disability Reform: A Public Consultation to Reform Disability Payments in Ireland

The Department of Social Protection is exploring changes to disability payments. New proposed additional payments may be categorised based on tiers of disability. A Green Paper on Disability Reform: A Public Consultation to Reform Disability Payments in Ireland has been released. Submissions are invited from individuals and stakeholder organisations, particularly people with disabilities,

Niall Dennehy 20/10/2023 Niall Dennehy 20/10/2023

Ardonagh Community Trust Awards Muscular Dystrophy Ireland €5,000

Ardonagh Community Trust awards Muscular Dystrophy Ireland €5,000 as part of their community grant scheme.

Niall Dennehy 12/09/2023 Niall Dennehy 12/09/2023

Reimbursement Approval of Evrysdi® for the Treatment of Spinal Muscular Atrophy

On 1 September the HSE announced that Risdiplam (Evrysdi®) has been approved for reimbursement in Ireland. This makes Risdiplam the third SMA medicine available in Ireland, alongside Zolgensma and Spinraza.