![[Watch]: The tech helping teen with Duchenne muscular dystrophy live his musical dream | BBC News](https://images.squarespace-cdn.com/content/v1/63c138561d3afd3c27c17d5d/1712761630243-244S5THUMRQ8OL9UCWTV/Screenshot+2024-04-10+160654.png)
[Watch]: The tech helping teen with Duchenne muscular dystrophy live his musical dream | BBC News
An assistive technology has now given the 16-year-old the potential to keep playing music longer. And he has been given the chance to perform at America’s music, tech and film festival.
Lights, Camera, Action - Vlog Your Irish Adventure- It’s On Us!
Are you ready to be the star of your own adventure? At Muscular Dystrophy Ireland we're on a mission to spotlight accessible locations, attractions, and thrilling experiences across Ireland, and we need your help to make it happen. Whether you're exploring solo, with a friend, a partner, or with the family, we invite you to be a part of this exciting initiative.
Save The Date: Muscular Dystrophy Ireland’s national conference 2024
We are delighted to announce that Muscular Dystrophy Ireland’s national conference will take place in person on Sunday, 10 November 2024, in Croke Park. There will be two programmes, one for adults and another for under-18-year-olds. Details of the programmes and booking form will be released at a later date. Stay tuned for updates!
Pathways: Navigating third level education for students with neuromuscular conditions
MDI’s latest report emphasises the urgent need for improved accessibility in Irish third level institutions. Inclusive Pathways: Navigating third level education for students with neuromuscular conditions highlights the challenges faced by students with neuromuscular conditions in accessing higher education.
Today we visited the Friends in Need Pop-Up shop in Long Walk Shopping Centre, Dundalk
All proceeds from the shop and the raffle will be donated to MDI to support youth services in the Northeast. If you are in the area, please drop in to pick up a bargain or buy a ticket for the raffle, some amazing prizes to be won between now and Saturday.
The Neurological Alliance of Ireland is calling for a dedicated Consultant Neurologist for Bantry hospital
On Tuesday March 26th at 1pm NAI will be holding an online event to enable TDs and counsellors to hear from local patients, patient organisations and clinicians on the need for a dedicated Neurology Service for Bantry hospital. Bantry hospital currently provides some clinics for neurological patients and there is an urgent need to secure and develop a dedicated neurology outpatient service in Bantry for patients throughout West Cork and Kerry.
Take action now for local neurology services: #patientsdeservebetter
The Neurological Alliance of Ireland, the national umbrella for neurological charities, together with 23 of its member organisations is asking people to take action for local neurology services. The Patient Deserve Better campaign is a joint initiative brought to you by NAI and Roche Products (Ireland) Ltd.
Reminder: MDI Membership renewal deadline is March 31st 2024.
If you’ve encountered any challenges renewing your membership, please don’t hesitate to reach out to us through our information line at +353 01 6236414. One of our decicated team will be happy to assist you.
Irish Wheelchair Association’s ability programme inviting jobseekers
Providing holistic, person-centred Coaching to enable a person to become an independent jobseeker or employee. Funded by the Dormant Accounts Fund and administered through Pobal, Ability is an employability and job-seeking skills programme for people aged 18 and over with a physical disability who want to get closer to work and progress on their career journey.
New Campaign for Neurology Services Launching March 12th
We’re one of 23 organisations joining the Neurological Alliance of Ireland’s Patients Deserve Better campaign which is calling for regional neurology services in 5 hospitals across the country.
Important Update Regarding Our Home From Home Service Pricing Structure
Further details will be provided as we finalize this new pricing structure which will come into effect on April 2nd 2024, and the way you book our Home From Home service is going to change.
Concerns Green Paper Social Protection Disabliity Reform
Members of Disability Federation of Ireland are very concerned about the implications of the Department of Social Protection’s Green Paper on Disability Reform and report that the people they support in the community are deeply worried.
Inclusivity for Persons With Disabilities? The Electoral Rights of Persons With Disabilities in the European Union
The first instalment in the 2024 Institute of International and European Affairs (IIEA) Disability Policy series will take place this Friday 16 February at 1pm when Dr Alejandro Moledo, Deputy Director of the European Disability Forum, will discuss the ‘The Electoral Rights of Persons with Disabilities in the European Union’ on a webinar.
Action Duchenne: Winter Webinar – James Poysky
As part of Action Duchenne’s: Science Education programme, they will be running a series of Winter Webinars with some of your favourite Duchenne experts! Action Duchenne are delighted to announce that they will be welcoming renowned psychologist and Duchenne expert Dr James Poysky to theiir webinar series.
EMA confirms recommendation not to renew marketing authorisation for Translarna
The CHMP agreed to re-examine its decision on request of the manufacturer PTC. This took place in January and despite efforts from the manufacturer and patient community the EMA announced on Friday, 26 January 2024 recommendation for non-renewal of authorisation of Translarna. The process found that while there was evidence of benefit from the treatment, it’s not statistically significant. Importantly there was no concerns about the safety of the treatment.
Rare Disease Clinical Trials Conference
https://docs.google.com/forms/d/e/1FAIpQLSfX6gzjUhklikV6MOJxkuKQR9EN0OkkWT8um16rTBoM2Q8xbQ/viewform
Power of Disability - Event for students, by students
This two-day online event will include discussions, presentations and feedback sessions encouraging students with disabilities to be leaders on their own campuses and will build practical skills on self-advocacy and constructive advocacy. Registration is free to attend, but registration is limited so you must book a spot in advance.
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
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.