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.
Check this out! An anonymous questionnaire about your well being!
Who are we? A team of researchers from the UCD School of Psychology in collaboration with Muscular Dystrophy Ireland.
A statment from MDI regarding the referendums on family, care and gender equality
MDI has “no position as an organisation” on the forthcoming referendum. This referendum will be a deeply personal matter to each individual.
Irish Wheelchair Association’s ability programme inviting jobseekers
Providing holistic, person-centred Coaching to enable a person to become an independent jobseeker or employee. Funded by the Dormant Accounts Fund and administered through Pobal, Ability is an employability and job-seeking skills programme for people aged 18 and over with a physical disability who want to get closer to work and progress on their career journey.
New Campaign for Neurology Services Launching March 12th
We’re one of 23 organisations joining the Neurological Alliance of Ireland’s Patients Deserve Better campaign which is calling for regional neurology services in 5 hospitals across the country.
Spotlight on members of our community living with neuromuscular conditions: Jimmy Murray
I don’t like the words inspiration / inspiring. That’s not my role in life. My job is to live life and not be an inspiration to people, though they mean well. A lot of people with disabilities hate that.
Barretstown and MDI, Youth Camp 2024
MDI are delighted to announce an exciting new partnership with Barretstown Children’s Charity to run this years MDI Youth Camp. To celebrate we are working hard to organise a wonderful weekend away from 25th - 26th of May for some of our young members aged between 1 - 17 years old with their immediate families or carers.
Important Update Regarding Our Home From Home Service Pricing Structure
Further details will be provided as we finalize this new pricing structure which will come into effect on April 2nd 2024, and the way you book our Home From Home service is going to change.
Concerns Green Paper Social Protection Disabliity Reform
Members of Disability Federation of Ireland are very concerned about the implications of the Department of Social Protection’s Green Paper on Disability Reform and report that the people they support in the community are deeply worried.
HSE Patient Feedback For National Genetics And Genomics Office
National Genetics & Genomics Office are aiming to better understand what people who are referred to genetic and genomic services, and their families, need to know to help them better navigate services. The knowledge gained will be used to work towards an improved patient experience of using genetic and genomic services. More information the advert attached. Expressions of interest close on 23rd February 2024.
Inclusivity for Persons With Disabilities? The Electoral Rights of Persons With Disabilities in the European Union
The first instalment in the 2024 Institute of International and European Affairs (IIEA) Disability Policy series will take place this Friday 16 February at 1pm when Dr Alejandro Moledo, Deputy Director of the European Disability Forum, will discuss the ‘The Electoral Rights of Persons with Disabilities in the European Union’ on a webinar.
Watch the MDI Community Supports Webinar And Download Our Case-Study Document
Organisations that focus on many aspects of life, such as Independent Living, employment, education and housing, presented information on the services they provide. Some of the presenters are themselves living with a disability.
Action Duchenne: Winter Webinar – James Poysky
As part of Action Duchenne’s: Science Education programme, they will be running a series of Winter Webinars with some of your favourite Duchenne experts! Action Duchenne are delighted to announce that they will be welcoming renowned psychologist and Duchenne expert Dr James Poysky to theiir webinar series.
EMA confirms recommendation not to renew marketing authorisation for Translarna
The CHMP agreed to re-examine its decision on request of the manufacturer PTC. This took place in January and despite efforts from the manufacturer and patient community the EMA announced on Friday, 26 January 2024 recommendation for non-renewal of authorisation of Translarna. The process found that while there was evidence of benefit from the treatment, it’s not statistically significant. Importantly there was no concerns about the safety of the treatment.