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Update on MDI Annual General Meeting 2020

Dear All In response to the current Government Guidelines in relation to ongoing Covid 19 emergency and the restrictions in place, the decision has been made to postpone the MDI Annual General Meeting (AGM) 2020 until further notice. The AGM was scheduled to take place on Saturday 16th May at the MDI Head Office in […]

MDI Update on Respiratory Clinic in Beaumont Hospital

Dear All We have received confirmation today from the Respiratory Clinic in Beaumont Hospital that appointments are 100% cancelled and that they will be rescheduled in due course. We understand that some members recently received text messages confirming their appointment for Friday – we have been advised to ask you to please disregard these. If you had […]

Helping Children and Teenagers to Understand

Here is some guidance from HSE Psychological Services on the coronavirus and helping children and teenagers to understand.   Children and teenagers will often take a lead from us in terms of how we respond to events, so it is important that we are not overly worried or anxious in their presence. Every child is […]

MDI Update on Adult Neurology Clinic in Beaumont Hospital

Dear All We have received confirmation today from the Adult Neurology Clinic in Beaumont Hospital that appointments are 100% cancelled and that they will be rescheduled in due course. We understand that some members recently received text messages confirming their appointment for Friday (20th March) – we have been advised to ask you to please […]

Derek Farrell – R.I.P Obituary

It was with great sadness that we at Muscular Dystrophy Ireland (MDI) learnt of the passing last Friday 6th March 2020 of former Chairman, Board Member, Director and friend of MDI, Derek Farrell. Derek first became involved with Muscular Dystrophy Ireland (MDI) in the mid 1980’s and he was appointed as MDI’s first Director (CEO) […]

Coronavirus – How we might be affected emotionally

Here is some guidance from HSE Psychological Services on minding our emotional well-being in relation to the coronavirus. While we are aware that some of the exercises in it are not suitable for everyone, we hope you find something of support to you. With Covid 19 we are all experiencing a new and challenging event. […]

Coronavirus Update regarding MDI activities

MDI wishes to let our members know that we are continuing to monitor developments in relation to the coronavirus and to evaluate potential steps to safeguard the health and wellbeing of members and staff. In the interest of protecting members who may be more at risk if they catch the coronavirus, we wish to let […]

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