Collaboration with Brona Mulligan – Exploring Health-Related Quality of Life of Adults living with Neuromuscular Conditions
MDI had the pleasure of collaborating with Brona Mulligan, who was completing her Master’s in Health Psychology at the University of Galway. A dedicated group of PPI contributors - individuals with lived experience of neuromuscular conditions - worked closely with Brona to help shape her research question and played an integral role throughout the research process.
Highlights and photos – MDI National Conference, Living Life to the Fullest, 10 November 2024, Croke Park.
We are delighted to share highlights and photos from MDI’s national conference, Living Life to the Fullest, which took place on 10 November 2024 at Croke Park. The conference featured two tailored programmes: one for adults living with NMCs, family members and friends, and key stakeholders, and another for young people aged 8 to17 years. A heartfelt thank you to all our wonderful contributors, participants and supporters for making the event a celebration of community, connection, critical analysis and positivity.
Save the Date: Family Camp at Barretstown, 16-18 May, 2025
We’re thrilled to share some fantastic news! Our family camp at Barretstown this past May was our most successful yet, bringing joy, connection, and unforgettable memories to everyone who attended. Thank you to all who made it such an incredible experience!
Call of interest: Global DMD Adult Group
In the coming months, the group hopes to expand these discussions, focusing on issues like navigating life’s milestones differently, especially as adults with DMD and BMD face unique challenges in adulthood. In collaboration with the World Duchenne Organization, the group intends to explore themes such as independence, relationships, and navigating life transitions.
LINK Webinar - Paving the Way for Disabled Student Success: Real-life Examples Across Europe.
Hosted on the United Nation's International Day of Persons with Disabilities, the European LINK Network is excited to bring you this 2-hour webinar, showcasing practical examples of successful support for disabled students across six European countries.
Applications are open for the Bank of Ireland Graduate Programme
Applications are open for three ringfenced graduate positions with disabilities in the Retail, and Accountancy & Finance divisions. These are 2-year contracts based in Dublin with hybrid working options. Disabled Graduates from all disciplines are encouraged to apply. The roles offer a rotational experience allowing graduates to develop critical skills in management, interpersonal relations, and technical expertise.
General Election Key Commitments Chart - Care Alliance Ireland
Care Alliance Ireland are disappointed that so few parties include a commitment to a new, updated National Carers Strategy which they firmly believe is vital to continue the development of appropriate, evidence-based supports and services for family carers across the country. Carers Alliance Ireland will continue to push for this in the next Dáil term, regardless of who forms a Government following the election. (Please see their event on this very topic - National Carers Strategy 2.0 - taking place on December 11th online
💙 Small Acts, Big Hearts! 💙
HUGE thank you to Erin Williams and Emma Coughlan from 3rd Year in Rosemont Secondary School, Sandyford, Dublin, who donated €50 to MDI last week!
Looking back on the incredible success of our "Living Life to the Fullest" Muscular Dystrophy Ireland National Conference 2024,
Mark your calendars for November 2025 and don’t miss the chance to connect, share, and learn at our 2025 National Conference, "Connections". Next year promises to be even bigger and better, featuring a Gala Dinner on the evening of the conference! Stay tuned for the exact date and venue details, which will be announced in the new year.
Help to #PrioritiseDisability in the general election.
MDI is a member of Disability Federation of Ireland (DFI) who are working tirelessly to advocate for the recognition, rights and improved quality of life for people living with neuromuscular conditions and their families. We encourage you to take action in the run up to the election Help to #PrioritiseDisability.
New Resource Available: Becker Muscular Dystrophy Guide for Families Now in English!
This guide offers an accessible yet comprehensive overview of BMD, providing essential information on the condition’s many aspects. Available in digital format, it’s a valuable resource for patients and families seeking clarity and guidance.
World Health Organization (WHO) currently completing a national assessment of assistive technology provision in Ireland and they want to hear from you!
The World Health Organization (WHO) Regional Office for Europe is currently completing a national assessment of assistive technology provision in Ireland, as requested by the Department of Children, Equality, Disability, Integration, and Youth. As part of this assessment, it is very important to us that WHO hear directly from assistive technology users and their families, carers, and supporters.
Disability Commitments in Party Manifestos
Disability Federation of Ireland (DFI) has gone through currently published General Election manifestos from the main political parties, or their General Election policy documents, to identify commitments on disability.
Ollie Hickey Programme Relaunch: Apply Now!
Applications for Q4 2024 are now open! 💡 MDI members living with neuromuscular conditions can apply for up to €2,500 in funding. This bursary is designed to support both children and adults in pursuing opportunities that enhance independence and inclusion in society.
A huge thank you to Neil Flynn, who will be taking part in the 2XU Wellness Half Marathon Run this December.
Please support our pal in Australia, Neil Flynn as he takes on some incredibly challenging fundraising events in memory of his Dad, Fergal Flynn.
Remembering MDI board member, Mr Justice Robert (Bobby) Eagar
Remembering MDI board member, Mr Justice Robert (Bobby) Eagar.
🚨 Last chance alert! There’s still time to secure your spot on the Adults’ Programme at MDI's *Living Life to the Fullest* conference!
🗓 Booking closes on Tuesday, 5 November at 11:00pm. Don’t miss out!
Attending our National Confence on November 10th at Croke Park? Check our or FAQs for all the answers!
If you have a question that we haven’t answered, please contact Gillian on respite@mdi.ie or +353 (0)1 6236414 and then select option 1.
Spotlight on members of our community living with neuromuscular conditions: Emer O’Sullivan
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 Emer O’Sullivan for sharing her story and raising awareness about spinal muscular atrophy (SMA).