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October 30th, 2019
The Better Options College Fair takes place next month for students with disabilities and specific learning difficulties considering their post leaving cert educational options.
October 24th, 2019
Opening Date: 24 October 2019
Closing date for pre-application form: 18 November 2019
Closing date for full applications (if shortlisted): 17 January 2020
Duration of Funding: 12 to 36 months
Level of funding: Up to €50,000 per year
September 12th, 2019
The Global Registry for COL6-related dystrophies is a research database for individuals who have been diagnosed with Bethlem Myopathy, Ullrich Congenital Muscular Dystrophy (UCMD) or an intermediate form of these conditions. The registry team is based at Newcastle University, UK. The registry aims to; improve clinical trial readiness, encourage and facilitate further research into the COL6 related dystrophies, provide researchers with data to support their research and assist doctors and other health professionals by providing them with up-to-date information on managing COL6-related dystrophies, to help them deliver better standards of care for their patients. For more information on how to participate please visit www.collagen6.org or contact the curator at collagen6registry@ncl.ac.uk
January 21st, 2019
There have been no previous studies in the Republic of Ireland looking at how many adult patients there are with different diseases of the muscles and nerves. We call these conditions ‘neuromuscular conditions’. This study is underway at Cork University Hospital and Beaumont Hospital, Dublin under direction of Dr. Aisling Ryan, Consultant Neurologist, CUH and Prof. Orla Hardiman, Consultant Neurologist, Beaumont Hospital. We are enrolling adult patients with neuromuscular conditions throughout the Republic of Ireland.
In this study we would like to find out exactly how many patients there are with different adult neuromuscular conditions in the Republic of Ireland. This will help us to form lists of patients and find out how common these conditions are, and to generate registers of specific conditions. These registers will be a useful way of ensuring that patients can be kept informed about the latest information that might be relevant to their disease including the latest treatment options. Sometimes there are clinical trials of potential new drugs, and registries will facilitate the inclusion of Irish patients with neuromuscular conditions.
Click here to find out more information about the study and enrolling procedure from the Patient’s Information Leaflet sample.Those who are interested to participate in the study or have further questions please do not hesitate to contact Dr Stela Lefter, Neuromuscular Research Fellow, mobile: 086 0245886 or via email: stela.lefter@hse.ie
December 20th, 2018
Elaine McDonnell, CEO, MDI
Dear Members and Friends of MDI,
We are pleased to inform you that, following a rigorous, fair and transparent recruitment process for the post of Chief Executive Officer of MDI, Ms Elaine McDonnell, current Interim CEO has been appointed to the full role, effective from 4th February 2019.
Elaine is extremely well known amongst our membership. As a parent of a young adult with muscular dystrophy, she is very aware of many of the challenges that living with muscular dystrophy may bring. Elaine and her family were among many energetic members from the Midlands region who over the years, helped to raise much needed funds and create essential awareness of the condition of muscular dystrophy. Elaine has been involved with Muscular Dystrophy Ireland for nearly 20 years and throughout this time she has served on various committees and sub-committees at both local and national level. She served on the National Executive from 2007 to 2017 fulfilling different roles including National Treasurer, Vice-Chairperson and Chairperson of MDI. Since February of this year, Elaine has worked tirelessly in the role of Interim CEO to bring stability to our organisation.
Building on the foundations laid from the beginning of 2018, with Elaine’s new appointment, Muscular Dystrophy Ireland will continue its work as a member led organisation that listens to the voice of our members and strives to meet the needs of every Individual who needs our support. This will be further supported by the rolling out of our new strategic plan, and we look forward to working with Elaine, our staff, and our members in completing and then implementing this plan over the coming years.
After the significant challenges of the last 3 years since the untimely loss of Joe T Mooney, it is very much time for MDI to begin building upon his legacy and refocus on our values and mission. This is a really important time for our organisation and I hope you will all join me in congratulating Elaine on her new appointment and continue to support and engage with MDI as we strive to develop our organisation for the benefit of all of our members.
Finally, on behalf of everyone in MDI, may I take this opportunity to wish you, your families and friends a peaceful Christmas and a happy New Year.
Yours sincerely,
John Rooche
Chairperson
?Muscular Dystrophy Ireland
