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).
PUBLIC CONSULTATION: Contribute to development of the new National Rare Disease Strategy
This consultation looks at what areas are important to the many stakeholders across the rare disease community, healthcare providers, the public and others. We aim to make sure that the new National Rare Disease Strategy responds to their needs.
My Neuro Survey 2024-2025
Are you getting the care and support you need for your neurological condition? Everyone deserves access to the right care, treatment and support at the right time, no matter who you are or where you live. Unfortunately, too often this isn’t the case. We are asking you to share your experiences and help improve neurological services for everyone affected by neurological conditions throughout Ireland.
The Kevin Gannon Memorial Cup will be taking place on Saturday 20th July in IT Blanchardstown
The Kevin Gannon Memorial Cup will be taking place on Saturday 20th July in IT Blanchardstown
Muscular Dystrophy Ireland supports Changing Places Awareness Day 2024!
It is a day dedicated to making a noise about what Changing Places toilets are and why they are so important. At the heart of the campaign is the call for Changing Places toilets to be installed in all big public spaces so that people can access their community.
The Ollie Hickey Fund: Supporting Mollie’s Horse Riding Journey
We are delighted to share how the Ollie Hickey Fund has positively impacted the life of one of our young members, Mollie. With the support of the fund, Mollie has been able to start horse riding lessons. Her grandad proudly shares that Mollie finds ‘tremendous enjoyment’ riding her horse, Scoobie. This experience not only enriches Mollie's life but also helps her develop new skills and build her confidence.
Spotlight on members of our community living with neuromuscular conditions: David Kennedy
As part of our members’ stories series, we are delighted to share David Kennedy story about the benefits he gains from keeping active through swimming.
Powerchair Football Inclusion Project
Muscular Dystrophy Ireland (MDI), with the support of Lord Taverners Ireland and The Association of Irish Powerchair Football (AIPF), is delighted to offer three adapted powerchairs to individuals interested in participating in Powerchair Football. Powerchair Football is an action-packed team sport that combines the skill of the wheelchair user with the speed and power of the chair. This sport is inclusive, allowing male and female participants to compete together.
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.
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.