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
Are you a parent or caregiver to a teenager/young adult with Duchenne Muscular Dystrophy?
We are doing research to assist us in creating resources for teenagers with Duchenne Muscular Dystrophy to help them prepare for moving into adulthood. What's involved? An individual interview online or in person with Siobhán O'Shea, postgraduate researcher, Discipline of Occupational Therapy, Trinity College Dublin' if you choose to take part.
Calling adults with Duchenne Muscular Dystrophy to share their experiences of moving into adulthood
We are doing research to assist us in creating resources for teenagers with Duchenne Muscular Dystrophy to help them prepare for moving into adulthood. What's involved? An individual interview online or in person with Siobhán O'Shea, postgraduate researcher, Discipline of Occupational Therapy, Trinity College Dublin' if you choose to take part.
The Neurological Alliance of Ireland is calling for a dedicated Consultant Neurologist for Bantry hospital
On Tuesday March 26th at 1pm NAI will be holding an online event to enable TDs and counsellors to hear from local patients, patient organisations and clinicians on the need for a dedicated Neurology Service for Bantry hospital. Bantry hospital currently provides some clinics for neurological patients and there is an urgent need to secure and develop a dedicated neurology outpatient service in Bantry for patients throughout West Cork and Kerry.
Save the date! The VHI Women's Mini Marathon is on Sunday 2nd June 2024.
Ready to make a difference? Our team welcomes everyone! #VhiWMM #TeamMDI
Take action now for local neurology services: #patientsdeservebetter
The Neurological Alliance of Ireland, the national umbrella for neurological charities, together with 23 of its member organisations is asking people to take action for local neurology services. The Patient Deserve Better campaign is a joint initiative brought to you by NAI and Roche Products (Ireland) Ltd.
Spotlight on members of our community living with neuromuscular conditions: Tania Quill
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.
Reminder: MDI Membership renewal deadline is March 31st 2024.
If you’ve encountered any challenges renewing your membership, please don’t hesitate to reach out to us through our information line at +353 01 6236414. One of our decicated team will be happy to assist you.