Campaign update: Equal access to treatments for SMA adults
There is still work to be done, and we are asking for further support in keeping the pressure on your representatives until every adult living with SMA has equal access to these life-changing treatments. Please visit the link in article and ask your TD for their continued support in overturning this restriction.
Help us keep the pressure on for access to treatments for SMA adults!
Can you please help us keep the pressure on until adults with spinal muscular atrophy (SMA) get equal access to the treatments they need? We urge you to contact your local TDs and senators, expressing the need for their continued support until this injustice is rectified. Time matters. Every week that passes without action is a week in which individuals continue to experience serious progression of this condition.
Highlights from the SMA event hosted by MDI and SMA Ireland
MDI in collaboration with SMA Ireland held an event for people with SMA and their families in Mullingar Park Hotel on Tuesday 20 August. This event was kindly supported by an independent grant from Roche, who had no editorial influence over the content.
Last chance to book your place – SMA Community Gathering.
A wee reminder of the closing dates to book your place for our summer Spinal Muscular Atrophy (SMA) Community Gathering which takes place on Tuesday 20 August at the Mullingar Park Hotel: Monday 5 August is the final day for young people to book a place Tuesday 13 August is the final day for adults to book a place( Bookings for under 5s are now closed).
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.