Survey Results on Adult Camp and Holiday Programme

Last month, MDI invited adult members to take part in a survey which aimed to find out members opinions on MDI’s Adult Camp and Holiday Programme (accessible and supported breaks in Ireland organised by MDI for Adult Members with Muscular Dystrophy). The survey received 104 responses between the 20th of November and 8th of December […]

Job Vacancy – Research Officer

Muscular Dystrophy Ireland is seeking applications for the role of Research Officer. The successful candidate will be responsible for meeting a key objective of MDI’s 2020-2022 strategy – the establishment of a patient registry for people in Ireland with neuromuscular conditions. Other priorities include supporting research to deepen understanding of neuromuscular conditions and quality of […]

IMPORTANT UPDATE FOR DR. O’BRIEN CLINIC AT BEAUMONT HOSPITAL

Beaumont Hospital has asked us to let members know that, unfortunately, the Muscular Dystrophy Clinic scheduled for this Friday, 18 December, has been cancelled. Dr O’Brien’s secretary will also send out text messages to people who have appointments.

Reminder – Patient Education Programme

REMINDER:   The call for applications to the 2021 IPPOSI Patient Education Programme in Health Innovation is closing at midnight on Sunday, December 13th, 2020. All of the information you need to complete the application, including a Guide for Applicants, a link to the online application form, as well as an instructional webinar are available […]

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