Research on Personal Assistance Service in Ireland published today

The Economic and Social Research Institute (ESRI) has published research on Personal Assistance Services in Ireland. It describes inconsistencies experienced by disabled people in accessing a PA service and its current limitations. You can view the full report here and a summary here. Overall, the evidence shows satisfaction among many service users, but suggests that […]

Call for community neurorehabilitation team for CHO 6

Throughout this December we’re joining with Neurological Alliance of Ireland and 21 other organisations as part of the #patientsdeservebetter campaign to call for a local community neurorehabilitation team for CHO 6.   There is no team for adults with neurological conditions throughout Wicklow, Dun Laoghaire and Dublin South East, this is despite funding being in place […]

MDI joins campaign for Investment in Community Neurorehabilitation Teams

Community neurorehabilitation teams provide vital care for people with a wide range of neurological conditions. However only 15 per cent of patients have access to a community neurorehabilitation team. Muscular Dystrophy Ireland will join with the Neurological Alliance of Ireland and twenty other national organisations this November to launch a nationwide campaign calling for investment […]

Budget 2023 and you

Budget 2023 and Disability Allowance It was announced that people who get Disability Allowance will get a once-off payment of €500 in November 2022. From January 2023, the maximum rate of Disability Allowance will increase by €12 with proportional increases for people on reduced rates of payment. The weekly rate for a qualified child will […]

NAI calls for urgent funding for neurological care services in Budget 2023

The Neurological Alliance of Ireland (NAI), the national umbrella for over thirty neurological charities in Ireland, is calling on the government to include €3.3 million in funding for neurological care services in next week’s Budget. They say this funding is essential to fully resource at least four of the seven required community neurorehabilitation teams, and […]

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