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.
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.
Study: The psychosocial needs of adults living with neuromuscular conditions’, UCD School of Psychology
This research is being conducted to identify and better understand these psychological and social challenges and to raise awareness of these issues and advocate for services to address unmet needs. To participate individuals over 18 years of age need to complete a survey which is anticipated to take between 15-20 minutes.
Study: ‘The Lived Experience of Health-related Quality of Life for Adults with Muscular Dystrophy in Ireland’ - Health Psychology, University of Galway
The main aim of this research is to explore the psychosocial needs including quality of life, coping, social support, depressive symptoms, and anxiety symptoms of individuals living with neuromuscular conditions. A secondary aim is to explore the impact of stigma in individuals living with one of these conditions. To participate individuals over 18 years of age need to complete a survey which is anticipated to take between 15-20 minutes.
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!
Meet Joanne, our Fundraising Support, who is taking on the VHI Women’s Mini Marathon
This will be Joanne’s 10th time taking part and she would love to have you join her this year💖 #VhiWMM #TeamMDI
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.
Today we visited the Friends in Need Pop-Up shop in Long Walk Shopping Centre, Dundalk
All proceeds from the shop and the raffle will be donated to MDI to support youth services in the Northeast. If you are in the area, please drop in to pick up a bargain or buy a ticket for the raffle, some amazing prizes to be won between now and Saturday.
Spotlight on members of our community living with neuromuscular conditions: Donal McTernan
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 condition, 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 Donal for sharing his story and raising awareness about myotonic dystrophy. 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