The Psychosocial Needs of Adults Living with Muscular Dystrophy and Similar Neuromuscular Conditions in Ireland.
In 2024, Dr. Finiki Nearchou and her team at UCD, in partnership with MDI, completed a study on the psychosocial needs of adults with muscular dystrophy and similar neuromuscular conditions.
We’re so excited to announce that Walk4Ollie is officially back!
Walk4Ollie returns for 2025, and this year is our biggest walk yet. Starting in Letterkenny, Co. Donegal, we'll walk over 210km to our home town of Enfield. This year, our target is to raise €15,000 for Muscular Dystrophy Ireland's "Ollie Hickey Fund", which will bring the funds raised to date to over €100,000
‘Time Is Muscle’: MDI Supports Families in Campaign for Rapid Review of Duchenne Treatment Givinostat
Please join us in asking your local TDs and senators to keep this matter on the political agenda by attending a briefing on the campaign at the Audio-Visual Room, Leinster House at 2.30pm on Wednesday 11 June. and leveraging your role as you elected representative to highlight the importance of timely and planned action. Time is muscle and delays in reimbursement risk excluding eligible children simply because the disease progresses while they wait.
Campaign update: Equal access to treatments for SMA adults
There is still work to be done, and we are asking for further support in keeping the pressure on your representatives until every adult living with SMA has equal access to these life-changing treatments. Please visit the link in article and ask your TD for their continued support in overturning this restriction.
GetAHEAD: Building the Future 2025
GetAHEAD are delighted to bring you once again, our annual careers event for students and graduates with disabilities, Building the Future!
Help us keep the pressure on for access to treatments for SMA adults!
Can you please help us keep the pressure on until adults with spinal muscular atrophy (SMA) get equal access to the treatments they need? We urge you to contact your local TDs and senators, expressing the need for their continued support until this injustice is rectified. Time matters. Every week that passes without action is a week in which individuals continue to experience serious progression of this condition.
The Irish Human Rights and Equality Commission is currently seeking expressions of interest for new members
The Disability Advisory Committee includes members of the IHREC Commission and external members appointed by the Commission. These new appointments will bring the external membership of the Committee to thirteen. At least 75% (that is 10 members) of the external members of the Disability Advisory Committee will be disabled people.
Update on Duvyzat™ (givinostat) for Duchenne Muscular Dystrophy
Duvyzat™ receives positive recommendation from the EMA’s CHMP for conditional approval in DMD.
Click to read what this could mean for families and what happens next.
The Socio-Economic Impact of Living with a Rare Disease for Families of Children with Rare Diseases
Caring for a child with a Rare Disease comes with financial, social, and emotional challenges. Share your experiences in a 30-min survey. Your voice matters—help shape better support systems.
Parent Peer Support Groups: Starting This May
Muscular Dystrophy Ireland is introducing a new Parent Peer Support Group series, facilitated by Consultant Clinical Neuropsychologist Dr Laura Gallagher. These online sessions offer a confidential, supportive space for parents and guardians to connect, reflect, and share experiences relevant to their child’s stage of life.
Ireland V Senegal at the Aviva - Apply now!
We’re thrilled to bring you another fantastic matchday opportunity, made possible through the Ollie Hickey Fund! We have accessible seating tickets for the upcoming FAI match at the Aviva Stadium, offering a brilliant view from the centre-pitch area.
![[Watch] MDI Congenital Muscular Dystrophies: optimising care and preparing for clinical trials](https://images.squarespace-cdn.com/content/v1/63c138561d3afd3c27c17d5d/1747017856751-H9HDECBNBON6ZV0WL2W1/Screenshot+2025-05-12+033852.png)
[Watch] MDI Congenital Muscular Dystrophies: optimising care and preparing for clinical trials
We are delighted to share a video of Dr A Reghan Foley’s presentation at MDI’s CMD Community Gathering which took place in August 2024. Our warm thanks to Dr Foley for her generosity in sharing her knowledge and expertise! The community gathering was an opportunity for people living with any of the congenital muscular dystrophies – including Collagen VI-related dystrophies, LAMA2-related dystrophies, LMNA-related congenital muscular dystrophy, alpha-dystroglycanopathies and SELENON-related dystrophy – and their families to connect as a community and learn together.
The 5th Annual Johnny Matthews Golf Classic raising support and awareness for four different charities
The 5th Annual Johnny Matthews Golf Classic will take place in Faithlegg Golf Club on Saturday 5th July 2025, raising support and awareness for four different charities – Autism Friendly Waterford, Cystic Fibrosis Waterford, Muscular Dystrophy Ireland and Transplant Football Ireland. The response to date has been fantastic, which reflects the admiration and affection with which the Waterford Football Family and Golfing Family have for Johnny.
![[Watch] The MDI Charcot-Marie-Tooth Community Gathering](https://images.squarespace-cdn.com/content/v1/63c138561d3afd3c27c17d5d/1747018223902-NQ21X6SQGJUWV5HEZ9UD/Screenshot+2025-05-12+034951.png)
[Watch] The MDI Charcot-Marie-Tooth Community Gathering
We are delighted to share a video of two presentations at our Charcot-Marie-Tooth Community Gathering which took place in October 2023. The community gathering was an opportunity for people living with CMT and their families to connect as a community and learn together. A big thank you to Rebekah Knight and Maureen Bradley for generously sharing their expertise and experiences! Rebekah tells us about the CMT Exercise Video Series that she developed and shares her guidance, wisdom and learning, followed by discussion. Maureen shares her learning and experiences on living well with CMT.
We are delighted to announce the launch of the MDI Assistive Technology (AT) Support Service.
The Assistive Technology support service offers individualised support to members with a neuromuscular condition by providing them with valuable information, support, and advocacy on how to secure smart technologies that can assist members to improve challenges faced in their everyday lives. Our aim is to create a supportive environment where individuals with a neuromuscular condition can thrive and achieve their full potential. People with disabilities face a variety of challenges be it at home, in education, employment, healthcare, social isolation, independent living and funding.
RevUp 2025: Motorcyclists take to the road in a 3 day mystery tour on May 3rd to rasie money for Irish Wheelchair Association.
To date, funds raised from RevUp 2018 - 2024 were used to fund three minibuses for a school and two sports clubs that cater for young people with disabilities as well as three powersoccer chairs recieved by MDI members, eight basketball wheelchairs and a hand cycle for twelve young people who can now participate and enjoy the sport that they love.
Introducing Our New Wellbeing Programme with Siel Bleu
Muscular Dystrophy Ireland (MDI) is delighted to launch a new pilot wellbeing programme in partnership with Siel Bleu Ireland, made possible through the Ollie Hickey Fund. This unique initiative is designed for both children and adults living with neuromuscular conditions. It brings together a multidisciplinary team of physical trainers, physical therapists, and nutrition professionals, all focused on supporting participants to live well through safe, adapted, and personalised approaches to wellness.
Webinar: Neurodiversity in Duchenne
We wish to draw your attention to a webinar coming up with Action Duchenne: Neurodiversity in Duchenne on Monday 12th May, 6:00pm with James Poysky.
🧠 HSE Project: Improving Care for People with a Neurological Condition
The HSE is working on a new plan (called an integrated approach) to help improve care for people with a neurological condition. A neurological condition is when the brain, spinal cord, or nerves aren’t working properly. Some examples include Parkinson’s disease, epilepsy, head trauma, multiple sclerosis, motor neurone disease, headache (and migraine). We want to hear from people who use these services—patient and service user partners — so we can help improve care together.