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.
What Budget 2024 means for people affected by neuromuscular conditions so far
Additional measures have been unveiled that will impact a range of departments, the precise details of these measures are still in the process of becoming clear. We are currently working on providing a more extensive analysis of these actions, which will be accessible in the forthcoming weeks as we collect additional information.
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,
Job Opportunity: NTMA Associate Programme 2024
Job opportunity 📣 If you studied Accountancy / Commerce / Finance / Banking / Credit / Economics / Law/ Mathematics / Project Management or similar this could be for you! Final years students of relevant degrees are also encouraged to apply.
Disability Federation of Ireland: Devastating Sidelining Of Disabled People
Unfortunately, Budget 2024 seemed to give something to everyone, but not nearly enough to those who need it most. The government could have chosen to invest in disabled people, tackling exclusion and poverty. It did not, instead leaving many disabled people facing an income cliff edge in 2024 and an ongoing lack of the services and supports necessary for independent living and community inclusion. Read DFI’s full analysis
In Profile: Interview with Aoife McNicholl Ireland Powerchair Football Team Member.
I’m Aoife McNicholl and I play powerchair football. I have Spinal Muscular Atrophy Type II. Powerchair football is a unique sport that provides opportunities for people with a high level of impairment to access the game of football.
Are You Interested In The Development Of A Registry For People With Neuromuscular Conditions In Ireland?
MDI are forming an advisory group to help with the development of a registry. If this interests you, and you would like more information or to be involved please email mdiresearch@mdi.ie
If you or your son is currently taking Translarna, and you would like to express your views on the recent EMA announcement please contact MDI
PTC therapeutics have asked for a re-examination of the data with a final decision expected in January 2024. Muscular Dystrophy Ireland is working collaboratively with clinicians in Ireland and other muscular dystrophy patient organisations from Europe to support people during this time.
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.
Call For Participants: Take part in Duchenne Muscular Dystrophy (DMD) Study
Calling adults with Duchenne Muscular Dystrophy to share their experiences of moving into adulthood.
Muscular Dystrophy Ireland awards the first annual Dr John Roche Education Bursary to students living with a neuromuscular condition, presented by Minister for Education, Norma Foley, TD.
Muscular Dystrophy Ireland awards the first annual Dr John Roche Education Bursary to students living with a neuromuscular condition, presented by Minister for Education, Norma Foley, TD.
In Profile – MDI Member, Thomas Byrne, Shares His Story of Living With the Neuromuscular Condition, Charcot-Marie-Tooth
I am 52 and from County Laois. I have worked with Citizens’ Information since 2006 and I also do some voluntary work with Cuisle Cancer Support Centre. I go to Beaumont Hospital ever year for a check-up with consultant neurologist, Margaret O’Brien, as I have the neuromuscular condition, Charcot-Marie-Tooth (CMT). I also have dyslexia. My family support worker from Muscular Dystrophy Ireland, Marie Kealy, is in regular contact with me and is a great support.
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.
Limb Girdle Muscular Dystrophy (Lgmd) Community Gathering
Muscular Dystrophy Ireland (MDI) is pleased to invite you to our LIMB GIRDLE MUSCULAR DYSTROPHY (LGMD) COMMUNITY GATHERING.