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.
🚨 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.
Best of luck to our Dublin Marathon runner, Lorcan Fitzgerald!
Lorcan has chosen to support MDI as part of his marathon effort! The race takes place this Sunday morning, and we are with Lorcan every step of the way after his hard work and training over the last few months.
Minister presents the MDI Dr. John Roche Education Bursary Award to celebrate the achievements of students living with neuromuscular conditions.
On 21st October, we hosted the presentation of the Dr. John Roche Education Bursary at the MDI Head Office. The event was a significant occasion attended by Minister for Finance, Jack Chambers, who presented the bursary awards.
EMA Recommend Against Renewing Translarna for DMD
The Committee for Medicinal Products for Human Use (CHMP), part of the European Medicines Agency, has again advised against renewing approval for Translarna (ataluren), a drug used to treat Duchenne muscular dystrophy (DMD) caused by a nonsense mutation in the dystrophin gene.
There is still time to Move for MDI this month! 🚴♀️
Find out why Cormac is moving for MDI and join him in whatever way works for you! Sign up on our campaign page.
Rathfeigh, Skryne & Tara community raise €1,113 for MDI
The Rathfeigh, Skryne & Tara community chose MDI as their charity of choice for their recent Family Field Day. The event was a huge success with a barbeque and fun family activities and raised an incredible €1,113.04 which was received with thanks by MDI.
Inclusion of children and young people in clinical trials across Europe
The aim of this group is to facilitate the inclusion of children and young people in clinical trials across Europe avoiding any language barriers. The group recently identified that some patients could not take part in a clinical trial because they do not speak the official language of the country where the trial is performed.
Advocating for people living with neuromuscular conditions and their families:MDI and our umbrella organisations – Budget 2025 asks and general election manifestos.
We provide an overview of key issues identified by MDI as important for our community and a flavour of how some of these umbrella organisations are championing these causes in their pre-budget 2025 submissions and election manifestos. We are members of Care Alliance Ireland, Disability Federation of Ireland, Health Research Charities Ireland (HRCI),The Irish Platform for Patient Organisations, Science & Industry (IPPOSI), Neurological Alliance of Ireland (NAI), Rare Diseases Ireland (RDI) and The Wheel. You can read their specific submissions/manifestos by clicking on each of the organisations’ names above.
Join Paracyclist Cormac O'Callaghan and Move for MDI
Whether you walk, roll, play boccia, cycle - we want you to move in any way that feels good to you, your participation will help support those living with muscular dystrophy across Ireland. Every movement makes a difference!
Breaking Down Barriers: University of Galway and Chronic Pain Ireland Event on Sex and Gender in Chronic Pain
This hybrid event will explore the critical issue of sex and gender in chronic pain, inviting all genders to join the conversation. While chronic pain may affect individuals differently, this event will outline what we now know about sex and gender as variables in chronic pain, what impact the outcomes of the PAINDIFF network will have on the study of sex and gender in pain and how this may inform on diagnosis and treatment outcomes for everyone.