MDI is a partner in Rare Diseases Irelands campaign ‘Get Rare Aware’.
This campaign is calling on the Government to urgently double the number of conditions screened for in Ireland’s newborn bloodspot screening (NBS) programme also known as the ‘heel prick test’ to the European average of 18.
Check out our fun and interactive online youth activities over the coming months!
The MDI Youth Team would like to welcome its young & young adult members to join us for some fun and interactive online youth activities over the coming months. These events will be run in conjunction with "Celeb Entertainment".
September is Muscular Dystrophy Awareness Month!
MDI is excited for Muscular Dystrophy Awareness month and looking forward to sharing many family stories, engaging with our members and the online community, and launching our ’30 Days of Strength’ campaign on social media #30daysOfStrength,” This September go green in support of raising awareness for Muscular Dystrophy!
Highlights from the SMA event hosted by MDI and SMA Ireland
MDI in collaboration with SMA Ireland held an event for people with SMA and their families in Mullingar Park Hotel on Tuesday 20 August. This event was kindly supported by an independent grant from Roche, who had no editorial influence over the content.
The legendary Forde sisters raise €6,320 for Muscular Dystrophy Ireland this year!
A big shout to Caoimhe & Aisling – the legendary Forde sisters who have spent the summer fundraising in memory of their brother Ciarán, who passed away 10 years ago this year. The girls took on the mighty Cork City Marathon in June and thanks to their incredible family & friends raised €4,820! They then hosted a fundraising collection in Kanturk in August which raised an incredible €1,500 – bringing their total fundraising for the year to €6,320.00!
A HUGE thank you “Team MDI” who took part in the VHI Women’s Mini Marathon 2024
Together, they raised €3,898 to support our services this year and raise awareness of MDI through the event. We hope to build our team even further next year so watch this space!
We are excited to announce the launch of our 8-week Adapted Pilates series.
Classes are commencing Wednesday 4th September at 2.30pm and will continue for 8 consecutive weeks. Based on feedback, we know many of your teens have half days from school on Wednesdays, making this an ideal time to join in. This programme is a fantastic way to stay active, connect with others, and support the Muscular Dystrophy community.
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.
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.
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