Exploring loss

Exploring loss through death Thursday 10th March from 7pm to 9pm via Zoom The death of the someone close to you can be a very difficult time.  This session will help you to navigate this challenging time. For more details or to register for this event see poster or contact your local Family Support Worker, […]


Member’s course runs via Zoom every second Wednesday from 11am to 1pm, Parents / Carers course runs monthly via Zoom on Tuesdays For more details one either of the above courses click here or see poster below or contact your local Family Support Worker, call Ewa on 086 6043365 or email mdiproject@mdi.ie.

Below are details of an Apple Green fuel service and a smartphone app which many of our members may find useful.   There is also a link to a short animated video which might help you better understand this very useful service which Apple Green provide. http://files.fuelservice.org/applegreen/fuelService-animation-ireland-applegreen-new-banner-2.mp4

Survey on Access to Health Information

  Dear MDI Member, We have been approached by IPPOSI – the Irish Platform for Patient Organisations, Science and Industry – to invite you to share your perspective on access to health information. IPPOSI hosted a Citizens’ Jury on Access to Health Information with 25 members of the public in April 2021. The findings from this jury will be […]

BT Young Scientists create new prototype of leg splint for people with Charco-Marie-Tooth

Muscular Dystrophy Ireland would like to wish Limerick students, Lucy Noonan and Joanna Ryan, the very best in the BT Young Scientist competition with their project ‘Optimizing leg splint orthotics for individuals with Charcot-Marie-Tooth disease’ (CMT). Their project is one of 550 to make it through to the first ever online version of the exhibition […]

Changing Places Ireland

Changing Places Ireland have created a petition to Make Changing Places Toilet Facilities mandatory in Public Buildings.  Please take a moment to add your name and share the petition via email and social media. Changing Places Toilet Facilities are different from standard accessible toilets. They provide extra equipment like a hoist and an adult sized changing bench. In Ireland there are only 15 Changing Places […]

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
  • 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

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core Myopathy
  • Congenital Fibre-type Disproportion 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 Myositis

  • 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

  • Friedreich’s Ataxia

12. Other (Please Specify)

13. Unspecified