Round Up On Research Developments By Condition
Neuromuscular conditions can be difficult to diagnose and manage, so research is vital for families and for quality of life. In this issue, we include a round-up of some research developments that have taken place in recent months
Transitioning To Adulthood
Are you over 18 years of age, living with a neuromuscular condition and interested in sharing your experiences and challenges of transitioning to adulthood such as leaving secondary school, getting a job, going to post-secondary education, meeting young people socially etc?
Building Connections Programme
The Building Connections programme was a research initiative facilitated by PPI (public and patient involvement) Ignite Network in collaboration with MDI. This programme ran over three weeks from 31 October to 14 November
United Nations Officially Designates 7 September As World Duchenne Awareness Day
The adoption of the resolution ‘World Duchenne Awareness Day’ is the UN’s first formal acknowledgment of a day dedicated to a rare condition.
Highlights Of Our Events For Young People And Families Aug - Dec 2023
Hightlights include: Croke Park and Skyline Tour, Family Day at Dublin Zoo, the MDI Science Programme, Condition-specific community gatherings and MDI progress in connecting with people attending neuromuscular clinics.
Clare Teenager With Muscular Dystrophy Switches On Bunratty Castle’s Christmas Lights
15-year-old Jordan Perez, from Sixmilebridge, who is bravely battling muscular dystrophy has just returned home after undergoing treatment at Temple Street Hospital for nine months.
Would you like to volunteer two hours to support MDI this Christmas?
We are seeking volunteers to help at the Rotary Club of Newbridge Remembrance Tree fundraiser in Dunnes Stores Newbridge/
The MDI- Assistive Technology Fund
This is open to members in CHO 5 - Waterford, Wexford, Carlow, Kilkenny, South Tipperary as it is a lottery fund. Closing date 14th of December. Muscular Dystrophy Ireland (MDI) is keen to support members living with neuromuscular conditions to get Assistive Technology to enhance their independence and quality of life. In order to do this, we are offering financial support through the Assistive Technology Fund.
Newborn babies to be tested for Spinal Muscular Atrophy from next year – a victory for our community!
We are really pleased to share the good news that Spinal Muscular Atrophy (SMA) has been approved for inclusion in Ireland's National Newborn Bloodspot Screening Programme, commonly known as the heel prick test. Approval of SMA is a massive milestone for the community and overall progress of newborn screening in Ireland. It is particularly valuable because new treatments have become available for SMA in recent years with the potential to significantly improve outcomes through earlier diagnosis and treatment.
What Budget 2024 means for people affected by neuromuscular conditions so far
Additional measures have been unveiled that will impact a range of departments, the precise details of these measures are still in the process of becoming clear. We are currently working on providing a more extensive analysis of these actions, which will be accessible in the forthcoming weeks as we collect additional information.
Green Paper on Disability Reform: A Public Consultation to Reform Disability Payments in Ireland
The Department of Social Protection is exploring changes to disability payments. New proposed additional payments may be categorised based on tiers of disability. A Green Paper on Disability Reform: A Public Consultation to Reform Disability Payments in Ireland has been released. Submissions are invited from individuals and stakeholder organisations, particularly people with disabilities,
Job Opportunity: NTMA Associate Programme 2024
Job opportunity 📣 If you studied Accountancy / Commerce / Finance / Banking / Credit / Economics / Law/ Mathematics / Project Management or similar this could be for you! Final years students of relevant degrees are also encouraged to apply.
Disability Federation of Ireland: Devastating Sidelining Of Disabled People
Unfortunately, Budget 2024 seemed to give something to everyone, but not nearly enough to those who need it most. The government could have chosen to invest in disabled people, tackling exclusion and poverty. It did not, instead leaving many disabled people facing an income cliff edge in 2024 and an ongoing lack of the services and supports necessary for independent living and community inclusion. Read DFI’s full analysis
In Profile: Interview with Aoife McNicholl Ireland Powerchair Football Team Member.
I’m Aoife McNicholl and I play powerchair football. I have Spinal Muscular Atrophy Type II. Powerchair football is a unique sport that provides opportunities for people with a high level of impairment to access the game of football.
Are You Interested In The Development Of A Registry For People With Neuromuscular Conditions In Ireland?
MDI are forming an advisory group to help with the development of a registry. If this interests you, and you would like more information or to be involved please email mdiresearch@mdi.ie
If you or your son is currently taking Translarna, and you would like to express your views on the recent EMA announcement please contact MDI
PTC therapeutics have asked for a re-examination of the data with a final decision expected in January 2024. Muscular Dystrophy Ireland is working collaboratively with clinicians in Ireland and other muscular dystrophy patient organisations from Europe to support people during this time.
Ardonagh Community Trust Awards Muscular Dystrophy Ireland €5,000
Ardonagh Community Trust awards Muscular Dystrophy Ireland €5,000 as part of their community grant scheme.
Call For Participants: Take part in Duchenne Muscular Dystrophy (DMD) Study
Calling adults with Duchenne Muscular Dystrophy to share their experiences of moving into adulthood.
Muscular Dystrophy Ireland awards the first annual Dr John Roche Education Bursary to students living with a neuromuscular condition, presented by Minister for Education, Norma Foley, TD.
Muscular Dystrophy Ireland awards the first annual Dr John Roche Education Bursary to students living with a neuromuscular condition, presented by Minister for Education, Norma Foley, TD.
