Brain Involvement in Dystrophinopathies (BIND) Project
The BIND project is the first large-scale effort to better understand brain involvement in Duchenne and Becker Muscular Dystrophy (DMD and BMD). Funded by the EU, it brings together 19 partners from Europe and Japan. While muscle weakness has been the primary focus in recent decades, brain involvement has received less attention.
September 25th is World Ataxia Awareness Day
International Ataxia Awareness Day (IAAD) is on September 25th of each year. It is a coordinated effort from individuals and Ataxia organizations around the world to help shed light on this rare disease. NAF is committed to leading the way on this outreach effort – but we need your help! We encourage individuals and disease organizations to join us by planning events and/or awareness campaigns for IAAD.
Today is World Myositis Day!
Myositis is an inflammatory autoimmune condition that can cause muscles to become weak and painful. Idiopathic inflammatory myopathies are an umbrella term for the different types of myositis. These autoimmune conditions mean the body attacks its own muscles, connective tissue, blood vessels, skin, lungs, and other organs. This often occurs together with other symptoms, such as muscle swelling, pain, fatigue, difficulty moving limbs or lifting arms, increased falls, trouble swallowing, and others.
Darts Fundraiser and Half Marathon Raise Over €4,900 for MDI with World-Class Darts Stars
Stepanie & John O’Hara go all out every year to bring world-class players from the darts world to Ireland and this year was the turn of Simon Whitlock, who gave his jersey to the lovely Shannon at the end of the night! This year’s events raised €1,884.90 to support our work.
This Week is World Mitochondrial Awareness Week!
World Mitochondrial Disease Week raises awareness about mitochondrial diseases (mito). It aims to improve the lives of people affected by mito and to increase awareness among doctors and the general public.
![[Watch] Raise your voice for Duchenne: the documentary for World Duchenne Awareness Day 2024](https://images.squarespace-cdn.com/content/v1/63c138561d3afd3c27c17d5d/1726589633737-UYGRVKF0P4KF83C4JUKF/GSRvM8vXYAAdLOH.jpg)
[Watch] Raise your voice for Duchenne: the documentary for World Duchenne Awareness Day 2024
September 7 is World Duchenne Awareness Day. On this day we raise awareness for Duchenne and Becker muscular dystrophy around the globe. As every year, World Duchenne Awareness Day have a special theme that deserves more attention. This year saw the official launch of the documentary Raise Your Voice for Duchenne, directed by Nicoletta Madia and produced by Arim Communication!
Be one of the first 10 households to book your spot at MDI’s Conference and receive an Amazon Alexa for attending!
Join us for Muscular Dystrophy Ireland's National Conference, Living life to the fullest, on 10 November 2024 at Croke Park, Dublin! This day-long event offers a supportive space for people with neuromuscular conditions (NMCs) and their families to connect, share and learn.
Spotlight on members of our community living with neuromuscular conditions: Rose Maloney Quinn
As part of our members’ stories series, Rose Maloney Quinn is delighted to share her story about her career. Rose lives with the neuromuscular condition, Charcot Marie Tooth type 1X (CMT1X).
Today Is International Myotonic Dystrophy Awareness Day!
The colour green has been chosen to represent International Myotonic Dystrophy Awareness Day which takes place on 15 September and many buildings throughout the world will be lit up green on the day! As MDI’s News Update focused on Myotonic dystrophy last January, we are happy to provide an update on research developments since then.
Thank you to everyone who has participated in our research collaboration studies!
Thank you to everyone who has participated in our research collaboration studies this year. ‘Supporting Transitions to Adulthood Resources (STAR) Project’ and ‘The Lived Experience of Health-Related Quality of Life for Adults with Muscular Dystrophy’ have closed. We will publish reports on our website once the results have been analysed.
Civil Service WAM Placements - Applications Now Open!
Applications are currently open to graduates with disabilities for ten month, paid, mentored work placements in the Civil Service based nationwide at Executive Officer level. WAM are seeking graduates from ALL disciplines.
This week we would love to highlight the family of Abbie Byrne
The family went all out to arrange a celebration that Abbie would have loved, and their friends and family came together to raise an incredible €6,035.00 for MDI. We were blown away by this generosity.
7 September is World Duchenne Awareness Day
On 7 September the World Duchenne Organisation will launch a documentary that portrays the lives of people living with Duchenne muscular dystrophy across the globe, it will share their journeys, challenges and successes, and captures the resilience and determination of the Duchenne community. People are encouraged to share it with their wider communities.
MDI is a partner in Rare Diseases Irelands campaign ‘Get Rare Aware’.
This campaign is calling on the Government to urgently double the number of conditions screened for in Ireland’s newborn bloodspot screening (NBS) programme also known as the ‘heel prick test’ to the European average of 18.
Check out our fun and interactive online youth activities over the coming months!
The MDI Youth Team would like to welcome its young & young adult members to join us for some fun and interactive online youth activities over the coming months. These events will be run in conjunction with "Celeb Entertainment".
September is Muscular Dystrophy Awareness Month!
MDI is excited for Muscular Dystrophy Awareness month and looking forward to sharing many family stories, engaging with our members and the online community, and launching our ’30 Days of Strength’ campaign on social media #30daysOfStrength,” This September go green in support of raising awareness for Muscular Dystrophy!
Highlights from the SMA event hosted by MDI and SMA Ireland
MDI in collaboration with SMA Ireland held an event for people with SMA and their families in Mullingar Park Hotel on Tuesday 20 August. This event was kindly supported by an independent grant from Roche, who had no editorial influence over the content.
The legendary Forde sisters raise €6,320 for Muscular Dystrophy Ireland this year!
A big shout to Caoimhe & Aisling – the legendary Forde sisters who have spent the summer fundraising in memory of their brother Ciarán, who passed away 10 years ago this year. The girls took on the mighty Cork City Marathon in June and thanks to their incredible family & friends raised €4,820! They then hosted a fundraising collection in Kanturk in August which raised an incredible €1,500 – bringing their total fundraising for the year to €6,320.00!
Spotlight on members of our community living with neuromuscular conditions: Annette Marie Murphy
As part of our members’ stories series, Annette Marie Murphy is delighted to share her story about her career.
A HUGE thank you “Team MDI” who took part in the VHI Women’s Mini Marathon 2024
Together, they raised €3,898 to support our services this year and raise awareness of MDI through the event. We hope to build our team even further next year so watch this space!