Neurological Alliance of Ireland Pre Budget Submission 2025
The Neurological Alliance of Ireland has submitted its Pre Budget Submission, on the theme of #rightplace, calling for funding to begin to address the regional inequity in access to neurology and neurorehabilitation services. Recent Budgets have seen welcome investment in neurology and neurorehabilitation services, but more needs to be done to tackle the stark regional inequity, where access to neurological care is dependent on where you live.
CHMP Issues Negative Opinion on Translarna™ Following European Commission Request for Review
EMA’s human medicines committee (CHMP) has recommended non-renewal of the conditional marketing authorisation of Translarna™ (ataluren) for the treatment of nonsense mutation Duchenne muscular dystrophy in Europe. This opinion follows the return of the previously issued negative opinion by the European Commission for re-review. Click here to read PTC Therapetics press release.
EUPATI Patient Expert Training Programme
The EUPATI Patient Expert Training Programme is a training programme about the medicines’ development process. The overall objective of the programme is to obtain a thorough understanding of the medicines research and development process, the patients’ role within and build capacity among the patient community to take on an active role in collaboration with the other involved stakeholders.
Save the date! Congenital muscular dystrophy community gathering and national youth club
Saturday, 10 August 2024. In-person at Muscular Dystrophy Ireland, 75 Lucan Road, Chapelizod.
Information Line Volunteer
Join Our Team on the Community Connection Programme!
Would you like to make a meaningful difference in the lives of individuals living with neuromuscular conditions?
Muscular Dystrophy Ireland (MDI) is seeking passionate individuals to join our volunteer team as Information Line Volunteers.
Closing date: 5th of July
Community Connection Programme Volunteer
Join Our Team on the Community Connection Programme!
Would you like to make a meaningful difference in the lives of individuals living with neuromuscular conditions?
Muscular Dystrophy Ireland (MDI) is seeking passionate individuals to join our volunteer team as Community Connection Programme Volunteers.
Closing date: 5th of July
Walk4Ollie 2024 is live!
This year the Walk4 Ollie event takes place from 16th – 20th July, and the route follows the amazing Waterford Greenway from Dungarvan, through Waterford City, Graiguenamanagh, Carlow Town, Monasterevin and finishing up in their hometown of Enfield. Paddy & Claire Hickey will be joined by friends, family and MDI members along the 200km route
The MDI-Dr John Roche Education Bursary, totalling €2,000 annually is now open for applications.
We are excited to announce that the Muscular Dystrophy Ireland-Dr John Roche Education Bursary, totalling €2,000 annually, is now open for applications. MDI hopes to support two of our members with €1,000 each towards their education costs this Autumn. The deadline for applications is Friday 26 July 2024.
MDI wishes the Republic of Ireland Powerchair Football Squad the best of luck in Inverclyde Scotland this weekend
We would like to wish the Republic of Ireland Powerchair Football Squad the best of luck as players, coaches Paul Gorman and Conal Fagan, and support staff take to the waters, roads, and skies tomorrow to travel to Inverclyde Scotland for this weekend’s tournament with hosts Scotland, England, and Northen Ireland. Great matches ahead, renewing old rivalries and catching up with old friends.
New Study on Biomarkers for Charcot-Marie-Tooth Type 1
This study is a continuation of prior research that has shown promising results in understanding CMT1A more deeply. Participation requires a single visit to Tallaght University Hospital for a standard blood draw and clinical assessment, which is conducted in one day to minimise inconvenience to participants. Full details about this study are available here.
European Commission Returns Translarna™ Opinion to CHMP For Re-evaluation
We are pleased to announce that the European Commission (EC) has decided not to adopt the Committee for Medicinal Products for Human Use's (CHMP) negative opinion on the renewal of the conditional marketing authorization of Translarna™ (ataluren).
Notice of AGM 2024
I am writing to inform you that Muscular Dystrophy of Ireland Company Limited by Guarantee (MDI) will hold its 2024 Annual General Meeting (“AGM”) on Saturday, 8th June 2024 at 12.30 pm at the registered office of the Company at 75 Lucan Road, Chapelizod, Dublin 20, D20 DR77 and, for members using Zoom facility, at the member’s home address as recorded in the register of members of the Company.
Watch: MDI Duchenne Muscular Dystrophy Community Gathering (Dublin, 18.11.2023)
We are happy to share our recording of our Duchenne muscular dystrophy community gathering which took place online and at MDI in Dublin on 18 November 2023. This is part of our series of condition specific community gatherings that aims to facilitate people living with specific conditions and their families to get together as a community and learn together.
Letter from Chairperson Mr. Patrick Cassidy: Nomination process for potential election to our board of directors is now open
Ppaid-up members of Muscular Dystrophy Ireland CLG as of 31st March 2024, we are pleased to let you know that, as of 1 May 2024, the nomination process for potential election to our board is now open.
Muscular Dystrophy Ireland proud to be welcomed on board as a partner for Carers Week 2024
Carers Week 2024 is set to take place from the 10th to the 16th of June this year with preparations already underway for what we hope will be a great week for all involved. This year will see a mixture of both online and in-person events being offered to promote an inclusive week for everyone.
Expansion of heel prick test could save or improve the lives of 200 babies born each year in Ireland.
MDI joined with other members of Rare Diseases Ireland outside the Dáil to launch a new Get Rare Aware campaign calling for the number of conditions newborn babies are screened for under the HSE National Newborn Bloodspot Screening Programme, more commonly known as the heel prick test, to be expanded from the current nine to the European average of 18 minimum. Support the campaign by contacting your Oireachtas representatives and ask them to demand that Ireland is above average when it comes to newborn screening.
![[Watch]: The tech helping teen with Duchenne muscular dystrophy live his musical dream | BBC News](https://images.squarespace-cdn.com/content/v1/63c138561d3afd3c27c17d5d/1712761630243-244S5THUMRQ8OL9UCWTV/Screenshot+2024-04-10+160654.png)
[Watch]: The tech helping teen with Duchenne muscular dystrophy live his musical dream | BBC News
An assistive technology has now given the 16-year-old the potential to keep playing music longer. And he has been given the chance to perform at America’s music, tech and film festival.
Lights, Camera, Action - Vlog Your Irish Adventure- It’s On Us!
Are you ready to be the star of your own adventure? At Muscular Dystrophy Ireland we're on a mission to spotlight accessible locations, attractions, and thrilling experiences across Ireland, and we need your help to make it happen. Whether you're exploring solo, with a friend, a partner, or with the family, we invite you to be a part of this exciting initiative.
Save The Date: Muscular Dystrophy Ireland’s national conference 2024
We are delighted to announce that Muscular Dystrophy Ireland’s national conference will take place in person on Sunday, 10 November 2024, in Croke Park. There will be two programmes, one for adults and another for under-18-year-olds. Details of the programmes and booking form will be released at a later date. Stay tuned for updates!
Pathways: Navigating third level education for students with neuromuscular conditions
MDI’s latest report emphasises the urgent need for improved accessibility in Irish third level institutions. Inclusive Pathways: Navigating third level education for students with neuromuscular conditions highlights the challenges faced by students with neuromuscular conditions in accessing higher education.