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News

Picturing Communication

February 18th, 2021

Would you like to take part in a Trinity College Dublin Research project which aims to learn more about how people who have communication impairments / experience communication difficulties think about communication? See below for more details.

 

 


February 16th, 2021

Getting Ireland’s Adults Covid-Vaccination ready – a public lecture from the Irish Gerontological Society on Wed 17 February from 3.00 – 4.15pm. For more information, follow the link here.


Musical Bingo

February 11th, 2021

MDI presents Musical Bingo via Zoom for adult members (over 18’s). Wednesday 24th February at 6.30pm.  Register by Monday 15th February by contacting your local Support Worker or by calling Sinead on: 086 3899285.

 


Zoom Family Quiz

February 11th, 2021

MDI Zoom Family Quiz for young members (under 18’s) and their families. Saturday 20th February. To register or for more details contact your local Youth Worker or phone Amanda on: 086 6066108.


MDI urges Government to prioritise people with muscular dystrophy who are ‘very high risk / extremely medically vulnerable’ and ‘high risk’ from Covid-19 for vaccination, as well as their unpaid/informal carers

February 6th, 2021

MDI has written to key Government ministers and those in opposition, appealing for the prioritisation of people with muscular dystrophy / neuromuscular conditions who are ‘very high risk / extremely medically vulnerable’ and ‘high risk’ from Covid-19 for vaccination, as well as their unpaid / informal carers. You can view our letter to Minister for Health, Stephen Donnelly, by clicking on the image in the link here.


Updated Frequently Asked Questions about coronavirus (Covid-19) and neurological disease from Adult Neurology Services

February 4th, 2021

Updated Frequently Asked Questions about coronavirus (Covid-19) and neurological disease from Adult Neurology Services

MDI wishes to share with you updated Frequently Asked Questions (FAQs) concerning COVID-19 and vaccination from Adult Neurology Services. MDI notes that the FAQs from Adult Neurology Services state that people with chronic neurological conditions such as Muscular Dystrophy, Spinal Muscular Atrophy are considered by the HSE as a ‘vulnerable’ group. However, the HSE information on people who are ‘very high risk’ and ‘high risk’ does not specifically mention people with muscular dystrophy and spinal muscular atrophy but it does list specific health issues that a person may have that qualifies them as ‘very high risk’ or ‘high risk’. You can read the FAQs here.


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Cavan, Monaghan, Louth Head Office - Dublin, Kildare, Wicklow Cork and Kerry Carlow, Kilkenny, Waterford, Wexford and Tipperary South Clare, Limerick and Tipperary North Laois, Longford, Offaly & Westmeath Galway, Mayo & Roscommon Donegal, Sligo, Leitrim

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