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.
Spotlight on members of our community living with neuromuscular conditions: Alex James Kennedy
As part of our members’ stories series, we are delighted to share Alex James Kennedy’s story about his music career.
Spotlight on members of our community living with neuromuscular conditions: Eoghan Curry
I lost the use of my right shoulder when I was 19. Then, when I was in my late twenties in 2009, I had issues with my left shoulder. I went to a shoulder specialist who referred me to a neurologist who ran all the tests. He brought me to the muscular dystrophy clinic in Beaumont in 2010 where I received a diagnosis there and then. Then I had more tests and received a genetic diagnosis in 2013. Facioscapulohumeral muscular dystrophy type 2 accounts for approximately 5 per cent of all cases of FSHD.
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.
Family Peer Support Connection Programme
MDI are looking to connect families together who would like to share and learn from each other’s similar experiences. If you are a family who would like to engage, please fill out application form / contact staff to join our families peer support contact list where you will be connected with another family on a similar journey.
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).
Spotlight on members of our community living with neuromuscular conditions: Maureen Pigott
As part of our members’ stories series, we are delighted to share Maureen’s Pigott’s story about running as a candidate in the local elections on 7 June. If you are a candidate living with a neuromuscular condition and who would like to share your personal experience of the campaign, please get in touch
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.
Spotlight on Pompe disease
As International Pompe Day takes place every year in April, we want to raise awareness about this rare condition. We are unaware of anyone who is living with the condition in Ireland and so we are simply sharing information about the condition.
Vhi Women's Mini Marathon: Sponsor a runner or the full team to support Muscular Dystrophy Ireland
We need 12 more participants to help us reach our goal of raising €3,000. Tag your run, walk or roll buddies! #FundraisingChallenge #SupportMDI #VhiWMM #TeamMDI
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.
Spotlight on members of our community living with neuromuscular conditions: Brendan O’Connell
Over the coming months we’re sharing spotlights on individual members of our community who are living with a variety of neuromuscular conditions. We began on Rare Disease Day, 29 February, to draw attention to the fact that rare disease isn’t just for one day. By sharing individual stories and information on their conditions, we want to raise awareness about the many neuromuscular conditions experienced by the diverse members of our community to whom MDI offers support. Special thanks to Brendan for sharing his story and raising awareness about McArdle disease, which is also called Glycogen Storage Disease Type V (GSD V). The spotlights will be added to a dedicated page on our website so that you can learn about people’s experiences of living with each condition.