Save the date! MDI condition-specific community get-togethers

July 28th, 2023


We are busy lining up some condition-specific community get-togethers for members, starting in September/October. The aim of the get-togethers will be to:

  • facilitate people living with specific conditions and their families to get together as a community
  • exchange information and experience, and support one another to improve the lives of people with the condition
  • ·learn about developments in treatments and research.


We have set some dates already that you might like to put in your diary and we will let you know of the dates of further get-togethers once they’re fixed. The get-togethers will be hybrid so you can attend online or in-person at MDI Offices, Chapelizod, Dublin 20. We will send out booking information closer to the events.


Limb girdle muscular dystrophy (LGMD) Community Get-Together on Wednesday 4 October from 11.30 to 15.00.

  • Details to follow.


Charcot-Marie-Tooth Community Get-together on Thurs 19 October, times to be confirmed

Speaker booked so far:

  • Maureen Bradley – will speak about Living well with CMT. Maureen is an MDI member and retired physiotherapist living with CMT.


Muscular Dystrophy Ireland and Myotonic Dystrophy Support Group UK (MDSG) Community Get-together on Thursday 26 October, 11.00 – 15.00 hours

Speakers booked so far:

  • Dr Chris Turner – will speak about Modern treatments for myotonic dystrophy. Dr Turner is co-author of The myotonic dystrophies: diagnosis and management and a consultant neurologist at the National Hospital for Neurology and Neurosurgery, Queen Square, London.
  • Michael Walker from MDSG(UK) – hear about the work of MDSG(UK) and ask Michael questions.

More information on these and other MDI Community Get-togethers soon!

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Categories: Events

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