SMA Ireland

Today SMA Ireland had a briefing at Leinster House calling for urgent action for equal access to SMA Treatments for all. Please share our story.

The life-changing impact of including SMA in Ireland’s newborn screening... youtu.be/BKy4vxysJHc?si… via @YouTube

@RareDiseasesIE @MDI_Ireland @CarrollJennifer Thank you @RareDiseasesIE

Delighted to support @SMAIrelandCom @MDI_Ireland call for equitable access to treatment. To think that 20 adults have been denied treatment because of their age. Treatment that will limit disease progression & enhance quality of life. #BrokenReimbursementSystem @CarrollJennifer

Thank you @TomClonan

@jonathanogrady @AoifeMcNicholl

Today SMA Ireland had a briefing at Leinster House calling for urgent action for equal access to SMA Treatments for all. Please share our story.

@DisabilityFed @NewstalkFM

@MDI_Ireland are launching their campaign for equal access to life-saving treatments for 20 people with Spinal Muscularity Atrophy currently precluded under HSE rules. #SMAtreatmentsForAll

@MDI_Ireland @SMAIrelandCom At the AV room briefing in Leinster House, there is support from government and non-government elected representatives.

In Australia, Chantel has access to Risdiplam and Spinraza, two life-changing SMA treatments for the last two years, slowing the progression of her condition. For those living with SMA in Ireland, there is no time to waste. Adults with SMA in Ireland need access to these treatments now, to have the same opportunities and outcomes as their peers. Please support our campaign and ask your TDs to help end this discrimination: bit.ly/4mpYWnk #SMATreatmentsForAll

Conor O’Kane, 37, is an adult with type 2 SMA, living in Co Antrim. Because, he lives in Northern Ireland, he has access to treatments that peers his age in the ROI do not. Help advocate for the same standard of healthcare for everyone #SMATreatmentsForAll bit.ly/4mpYWnk @naiireland @MDI_Ireland

SMA Ireland and MDI are campaigning to end inequity and discrimination against adults living with SMA in Ireland. Those who were over 18 at the time that the HSE approved three life-changing treatments have no access to medication they need. This restriction is arbitrary and not in line with our peers in the UK, Europe and across the world. In Northern Ireland, an adult living with SMA can access treatment, but those living in the Republic of Ireland are forced to go without it. SMA is a progressive condition, and every single day counts. Everyone should have access to the same standard of healthcare, regardless of their age. Please join our campaign and visit: bit.ly/4mpYWnk to email your local TD, asking for their support in ending this discrimination. #SMATreatmentsForAll

Please support our campaign to allow adults with SMA access to treatment. Please, visit: bit.ly/4mpYWnk and email your TD asking for them to support access to SMA treatments in Ireland for all, regardless of their age. #SMATreatmentsforall @naiireland

20 adults in Ireland are being denied life-saving treatments for Spinal Muscular Atrophy simply because of their age when the HSE approved them. Please email your local TDs & senators to ask them to support #SMAtreatmentsforall: mdi.ie/smatreatmentsf…

Despite promises, SMA screening for newborns has not yet been implemented in Ireland. As we approach end of 2024, time is running out to fulfil this vital commitment. Swift action needed to ensure early detection & prevent devastating consequences for newborns and families. @SMAEurope @RareDiseasesIE

SMA screening for newborns is still unavailable in Ireland. Despite a commitment to roll out testing in 2024, time is running out. With just 6 weeks left, urgent action is required to fulfil this promise and protect newborns' health. Newborn babies cannot afford to wait any longer. #BringSMAtoHeel @SMAEurope @RareDiseasesIE

SMA screening for newborns is still not in place in Ireland. @DonnellyStephen pledged to implement it in 2024, but with just 8 weeks left this year, urgent action is needed to #BringSMAtoHeel

SMA screening still hasn’t been added to Ireland's heel-prick test. @DonnellyStephen promised to introduce newborn screening for #SMA in 2024, but with just 9 weeks left in the year, time is running out. Urgent action is needed! #BringSMAtoHeel

SMA screening in Ireland's heel-prick has not been implemented. @DonnellyStephen committed to newborn screening for #SMA in 2024, but with only 11 weeks left in the year, there’s no time to lose. We need action now—newborn babies can’t afford to wait! #BringSMAtoHeel

Congratulations @ILMIreland on timely whitepaper "A manifesto for change". Key takeaway is that more disabled people should have confidence to put themselves forward for leadership positions. At @IrishWheelchair 24 AGM, Board seat left uncontested. Be the change you want to see.

Extremely grateful to @violetannetd for highlighting outrageous inequality w.r.t. adult access to SMA medicine in IRL. ~20 patients left untreated because of arbitrary @HSELive age-based access ceiling. Unjust, inequitable and unethical. #SMAAdults