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Research Call 2019-2020

October 24th, 2019


Muscular Dystrophy Ireland (MDI) is pleased to announce a call for research proposals under the Health Research Charities Ireland (HRCI) and Health Research Board (HRB) Joint Research Fund. Projects funded under this call will begin in November 2020.


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



Global Registry for COL6-related dystrophies

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

Study of Adult Neuromuscular Conditions in Ireland

January 21st, 2019






A Population-Based Epidemiologic Study of Adult Neuromuscular Conditions in the Republic of Ireland

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.


  • To obtain the prevalence data about the number of people with adult neuromuscular conditions in the Republic of Ireland
  • To generate specific registries for certain neuromuscular conditions
  • To generate specific care programmes for patients with adult 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

New Chief Executive Officer

December 20th, 2018

Elaine McDonnell, CEO, MDI

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
?Muscular Dystrophy Ireland

Cavan, Monaghan, Louth Head Office - Dublin, Kildare, Wicklow Cork and Kerry Carlow, Kilkenny, Waterford, Wexford and Tipperary South Clare, Limerick and Tipperary North Laois, Longford, Offaly & Westmeath Galway, Mayo & Roscommon Donegal, Sligo, Leitrim

1. Muscular Dystrophies

  • Becker muscular dystrophy
  • Duchenne muscular dystrophy
  • Manifesting carrier of Duchenne
  • Congenital muscular dystrophy - General
  • • MDC1A (merosin-deficient congenital muscular dystrophy)
  • • Rigid spine syndrome (RSS)
  • • Ullrich congenital muscular dystrophies
  • • Bethlem myopathy
  • Emery-Dreifuss muscular dystrophy

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core Myopathy
  • Minicore (Multicore) myopathy
  • Myotubular or Centronuclear myopathy
  • Nemaline myopathy

4. Mitochondrial Myopathies

  • Mitochondrial Myopathies

5. Metabolic Disorders

  • Metabolic disorders (general)
  • McArdle’s Disease
  • Pompe’s Disease

6. Periodic Paralyses

  • Periodic Paralyses

7. Autoimmune Myositides

  • Polymyositis, Dermatomyositis and Sarcoid myopathy
  • Juvenile dermatomyositis
  • Inclusion body myositis

8. Spinal Muscular Atrophies

  • Severe (Type I)
  • Intermediate (Type II)
  • Mild (Type III)
  • Adult spinal muscular atrophy

9. Hereditary Motor and Sensory Neuropathies

  • (Also known as Charcot-Marie-Tooth or Peroneal muscular atrophy)

10. Disorders of the Neuromuscular Junction

  • Congenital myasthenic syndromes
  • Myasthenia Gravis

11. Friedreich’s Ataxia

  • Facioscapulohumeral muscular dystrophy
  • Limb-girdle types of muscular dystrophy (LGMD) - General
  • • LGMD 1B (also known as Laminopathy)
  • • LGMD 1C (also known as Caveolinopathy)
  • • LGMD 2A (also known as Calpainopathy)
  • • LGMD 2B (also known as Dysferlinopathy)
  • • LGMD 2I
  • Ocular myopathies including ocularopharangeal muscular dystrophy

12. Other (Please Specify)

13. Unspecified