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Information Services

Very often the Information Service is the first source of assistance for people affected by a neuromuscular condition. It provides information about neuromuscular conditions and other subjects such as benefits, holidays, transport, support groups, genetics etc. Inquiries are received by letter, email or over the telephone from people who have neuromuscular conditions, their family and friends, professionals such as occupational therapists, public health nurses, general practitioners and from members of other organisations.

The Information Officer gathers and disseminates information on the various neuromuscular conditions.  They would also keep abreast of all developments in research throughout Europe and America. At the time of diagnosis of a neuromuscular condition, the person with muscular dystrophy and their family will receive basic information about the symptoms and progression of the condition from their medical consultant. Families often find it difficult to absorb all the information they receive at this time and it is recognised by our service that families should have access to information whenever they require it.

If you have a request for information, please contact the MDI Information & Research Officer, who is based in MDI’s head office in Dublin and will try to fulfill your request.

INFOMATION DISPLAY & LIBRARY

MDI’s Information and Display Library is located in the MDI’s office at Chapelizod and is a resource for members of MDI, MDI staff, people with neuromuscular conditions, and educational and health professionals with an interest in neuromuscular conditions. It is also available for people with other neurological conditions and disabilities, students doing special needs projects and other voluntary organisations or agencies.

LITERATURE IS AVAILABLE IN 7 MAIN AREAS:

  • Muscular Dystrophy Ireland publications and reports
  • Information about neuromuscular conditions and
    current management strategies
  • Research
  • Aids / adaptations
  • Entitlements
  • Disability and rare disease policy
  • General health information

The overall aim of the Information and Display Library is to empower people to educate themselves about their condition and their support needs, and to provide a service to education and health professionals in order to assist them in their work with people with neuromuscular conditions.

REQUESTING INFORMATION BY PHONE / EMAIL

If you are unable to visit the Information Library you are also welcome to contact the Information Officer by phone or email to get an information pack sent out to you.

EQUIPMENT DISPLAY AREA

The equipment display area is also a resource for people with neuromuscular conditions and other disabilities as it allows people to view a selection of aids and adaptations, and also provides an opportunity for individuals to try out such equipment for themselves. The range of aids and adaptions that you can see and try for yourself in the display area and throughout the building includes:

  • Height adjustable computer desks
  • Hoists (both cieling track and manual hoists)
  • Automatic doors
  • Closomat toilet
  • Height adjustable kitchen work top
  • Weighing scales (different options available for people who can’t use standard weighing scale).
  • Small aids including tap turners, kettle tipper, portable urinals, one way drinking straws – these small aids are also available for purchase.

OPENING HOURS

People are welcome to visit the library and display area with no appointment necessary between the hours of 9.30am-1pm and 2pm-4.30pm, Monday to Friday. It may be possible to visit between 1-2pm by making an appointment. People are also welcome to request information via phone or email and have it sent directly to them.

For more information, please contact the Information Officer on 01 6236414 or email mdiinfo@mdi.ie

 

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